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Full text of "Annual report : National Commission on Acquired Immune Deficiency Syndrome"

A 
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NATIONAL 
COMMISSION 
ON AIDS 




Annual Report to the President 
and the Congress 

August 1990 







NATIONAL COMMISSION 



$ 



ON 



ACQUIRED IMMUNE DEFICIENCY SYNDROME 



Annual Report 
August 1 990 




MEMBERS OF THE COMMISSION 

June E. Osborn, M.D. 
Chairman 

David E. Rogers, M.D. 
Vice Chairman 

Diane Ahrens 

Scott Allen 

The Honorable Richard B. Cheney 

Harlon L. Dalton, Esq. 

The Honorable Edward J. Derwinski 

Don C. Des Jarlais, Ph.D. 

Eunice Diaz, M.S., M.P.H. 

Donald S. Goldman, Esq. 

Larry Kessler 

Charles Konigsberg, Jr., M.D., M.P.H. 

Belinda A. Mason 

The Honorable J. Roy Rowland, M.D. 

The Honorable Louis W. Sullivan, M.D. 






COMMISSION STAFF 



Maureen Byrnes, M.P.A. 
Executive Director 



Frank Arcari, M.P.A 

Thomas D. Brandt, M.L.S. 

Adriana Carmack 

Lu Verne Hall 

Jason Heffner, M.Ed. 

Carlton H. Lee, Jr. 

Melanie Lott 

Lee Marovich 

Joan A Piemme, R.N., F.AAN. 

Karen Porter, J.D. 

Nicole Ryan 

Jane Silver, M.P.H. 

Patricia Sosa, Esq. 

Jeff Stryker 



TABLE OF CONTENTS 



Page 




Summary 1 

Chronology 7 
Documents 

Statement of Support for Americans with Disabilities Act 13 

Hearings: Overview of the HIV Epidemic 14 

Statement on the FY '90 Appropriations 18 

Statement of Support for Treatment on Demand for Drug Users 19 

Hearings: Health Care, Treatment, Finance and International Apects of the 20 

HIV Epidemic 

Statement on Bleach and HTV Control Research 25 

First Interim Report to President Bush and the Congress 27 

Commission Resolution on U.S. Visa and Immigration Policy 36 

Background Paper on AIDS and Immigration: An Overview of 

United States Policy ~ 41 

Federal, State and Local Responsibilities Working Group Hearing - 

St. Paul, Minnesota 58 

i 

Hearing and Site Visits: Regional Aspects of the HIV Epidemic in 

Southern California 62 

Social/Human Issues Working Group Hearing - Boston, Massachusetts 68 

New York City, Newark and Jersey City Site Visits 74 

Testimony of Chairman June E. Osborn, M.D. Before the 

Task Force on Human Resources of the Committee of the Budget 

of the United States House of Representatives on Meeting the 

Health Care Needs of People Living with HIV and AIDS 81 



vii 



Statement on the "CARE" Act of 1990 85 

Commission Letter to President Bush Urging Him to Resolve 

Visa - HIV Controversy Before International Conferences in the 

United States in June and August 86 

Hearings: Review of Executive and Legislative Branch Initiatives, Including the 
National Drug Control Strategy and the U.S. Bipartisan Commission on 
Comprehensive Health Care Report 88 

Statement That Despite Debate Among Epidemiologists, HIV Epidemic Will 

Have Greater Impact in 1990s than 1980s 92 

Working Group Summary Report on Federal, State, and Local Responsibilities 93 

Site Visits To Examine Issues Surrounding AIDS in Rural Communities 102 

Second Interim Report to President Bush and the Congress 106 

Hearings: Review of Current Research Activities, Particularly Clinical Trials 115 

Letters to Senate Majority Leader, Senator Mitchell, and Senate Minority 

Leader, Senator Dole, Urging Senate Consideration of the Comprehensive 

AIDS Resources Emergency (CARE) Act of 1990 120 

Statement on the AIDS Prevention Act (H.R. 4470) and the Medicaid AIDS 

and HIV Amendments Act (H.R. 4080) of 1990 122 

Letter to Senator Kennedy and Senator Hatch Underscoring Support for the 

Americans with Disabilities Act, and Declaring the Amendment Concerning 

Food Handlers Bad Public Health Policy 123 

Letters to the Speaker of the House, Representative Thomas Foley, 

and the House Minority Leader, Representative Robert Michel, 

Urging Congress to Resist Attempts to Impose a Federal Mandate 

on States for Name Reporting 124 

Testimony of Commissioner Donald S. Goldman Before the Subcommittee 

on Health and the Environment of the Committee on Energy and 

Commerce of the United States House of Representatives Regarding 

Immigration and Visa Policies 126 

Social/Human Issues Working Group Hearing - Dallas, Texas 129 

Hearings: Review of Current Health Care Personnel and Work Force Issues 135 

Social/Human Issues Working Group Hearing and Site Visits - 

Seattle, Washington 140 



vm 



Site Visits and Hearing to Examine HIV Infection and AIDS in 

Correctional Facilities 146 

Third Interim Report to President Bush and the Congress 153 

Appendices 

Appendix A - Public Law 100-607 173 

Appendix B - Supporting Documents for Background Paper on AIDS 

and Immigration 181 

Appendix C - Biographical Information 205 



XX 



The National Commission on Acquired Immune Deficiency Syndrome (AIDS) was 
established under Public Law 100-607 for the purpose of promoting the development of a 
national consensus on policy concerning AIDS and of studying and making 
recommendations for a consistent national policy regarding AIDS and the human 
immunodeficiency virus (HIV) epidemic. 

In its first year, the Commission has sought to fulfill its statutory mandate through 
public hearings, meetings, round table discussions, staff analyses, and interim reports, as well 
as site visits throughout the nation. These forums have provided a foundation for decision- 
making by providing an opportunity to consider expert testimony on the increasingly 
complex policy issues related to HIV infection and AIDS, and by giving the Commission 
occasion to interact with and learn from care providers and persons living with HIV 
infection and AIDS in their own communities. 

The Commission began its work at the close of a decade in which more than 120,000 
persons in the United States had been diagnosed with AIDS and over 70,000 of them had 
died. It is estimated that approximately 1,000,000 persons in the United States are infected 
with HTV and will be confronted with premature illness. With the interval between 
infection with HTV and onset of AIDS commonly up to ten years, at each increment we as 
a nation are assured that AIDS will continue to be a national concern into the Twenty- 
first Century. 

Confronted with the increasing human toll of the AIDS epidemic, the Commission 
early in its tenure recognized the need to intensify national efforts to understand and meet 
the needs of people living with HTV infection and AIDS. Accordingly, the Commission in 



its work has endeavored to create broad public agreement on the magnitude, scope and 
urgency of the HIV/ AIDS epidemic and to inspire leadership at all levels of both the public 
and private sectors to put in place effective, cooperative and non-discriminatory systems and 
resources required for prevention, comprehensive care, and research efforts necessary to 
halt the epidemic. 

Thus far, the Commission has conducted twelve days of full Commission hearings 
covering HIV/ AIDS related issues including health care, treatment, financing, research, 
regional aspects of the epidemic, correctional facilities, the health care work force, and 
executive and legislative branch initiatives including the National Drug Control Strategy and 
the U.S. Bipartisan Commission on Comprehensive Health Care Report. 

In addition to full Commission hearings, the Commission has established two working 
groups to look at specific aspects of the epidemic. The Working Group on Federal, State, 
and Local Responsibilities convened a hearing in St. Paul, Minnesota to examine the roles 
of the local, state, and federal governments in the HIV/ AIDS epidemic. The Working 
Group submitted a report on these hearings to the full Commission in March 1990. In its 
report, the Working Group found that a lack of clear definition of government roles and 
intergovernmental partnerships have seriously hampered the nation's response to the 
epidemic. It recommended that an interagency cabinet-level federal task force be 
established, a forceful, comprehensive national plan for responding to AIDS be developed 
and that direct emergency relief be provided to states and localities. 

The Working Group on Social/Human Issues has held meetings in Boston, Dallas, 
and Seattle. Its work has focused primarily on the relationship between HIV testing and 
early intervention, the range of services needed by those affected by the epidemic, and the 
partnerships needed to deliver these services. A report from this group is expected in the 
near future. 



The Commission has visited many regions around the country in an attempt to gain 
a better understanding of the diverse challenges confronting us in the HIV/ AIDS epidemic. 
Such site visits have taken place in Washington, D.C., Los Angeles, New York City, Newark, 
Jersey City, Dallas, Seattle, and Waycross, Macon, and Albany, Georgia. The Commission 
has visited with persons living with AIDS and HIV infection, their families, loved ones and 
care providers in such settings as an AIDS hospice, a veteran's hospital, public hospitals, 
shelters, a drug treatment program, a comprehensive hemophilia care center, clinics, a 
correctional facility, community based organizations and private homes. To date, the 
Commission has heard from as many as 500 individuals and organizations from over 50 
cities. 

Through interim reports, the Commission has brought urgent matters to the attention 
of the President and the Congress. The Commission has issued three such reports. In 
December, the first interim report of the Commission called attention to the need for frank 
recognition of the crisis situation in many cities and the failure of the U.S. health care 
system to appropriately confront the HIV/ AIDS epidemic. 

In April, the Commission's second interim report called for a national plan with 
clearly delineated responsibilities and agreement on the roles of federal, state and local 
government and the private sector. The Commission recommended that a federal 
interagency mechanism be established to coordinate a national plan. In the same report, 
the Commission emphasized the need for federal disaster relief to help states and localities 
most heavily impacted to provide the HIV prevention, treatment, care and support needed. 

In August, the Commission in its third interim report called attention to the rapidly 
increasing number of new AIDS cases diagnosed in rural communities across the country 
and the desperate need for resources. In the area of research, the Commission expressed 
growing concern over the need for clinical trials to be more encompassing, more readily 



accessible to all, easy to find, well managed and well coordinated. In addition, the 
Commission urged that greater research efforts be targeted at new drugs and therapies for 
the management of opportunistic infections. With regard to the health care work force, the 
Commission addressed the shortage of health care providers capable and willing to care for 
people living with HIV infection and AIDS. 

Through a series of resolutions adopted by the full Commission, the Commission has 
been proactive in calling upon the Administration and the Congress to reassess some of our 
existing policies. In the area of immigration, the Commission undertook a review of U.S. 
immigration and visa policy in light of the 1987 vote by Congress that put HIV infection on 
the list of dangerous contagious diseases denying entry to the United States. In its review, 
the Commission found current U.S. immigration policy to be discriminatory and without 
public health rationale, and issued a resolution calling upon the Administration to conduct 
a comprehensive review of immigration policies as they regard communicable diseases 
focusing on public health needs. In issuing its resolution, the Commission held a 
Washington press conference to define the issues and to alert policymakers to the 
implications of the current policy. The Commission was joined by the American Bar 
Association, the American Red Cross, the National Council of La Raza, the World 
Federation of Hemophilia, and the National Organizations Responding to AIDS. The 
Commission has also expressed strong support for H.R. 4506, introduced by Representative 
J. Roy Rowland, which would restore to the Public Health Service the authority to 
designate diseases to be listed for purposes of barring entry to the United States. 

In its statutory role of advising the President and the Congress, the Commission, 
through hearings, site visits, consultations with Members of Congress and the President, and 
testimony before Congressional committees, has played an active role in the policy debate 
around issues such as the Americans with Disabilities Act (ADA), treatment on demand for 



drug users, the funding of research programs involving the distribution of bleach, as well 
as legislative initiatives designed to provide critical resources needed to confront the 
HIV/AIDS epidemic such as the Americans with Disabilities Act (ADA) and the Ryan 
White Comprehensive AIDS Resources Emergency (CARE) Act of 1990. 

The Commission continues to monitor the recommendations of the Presidential 
Commission on the HIV Epidemic issued in July 1988. The Commission has worked closely 
with the National AIDS Program Office of the Public Health Service and other federal 
agencies to assess the level of implementation of these recommendations. 

Over the coming year, the Commission will continue to conduct its activities through 
a variety of forums in Washington, D.C. and across the country. Many important and 
complex issues remain. The role and responsibilities of the public health system, the impact 
of the epidemic on the African American and Hispanic American communities, financing 
and delivery of health care, prevention and education, and substance use are among the 
issues to be given focused attention. 

As the second decade of the epidemic begins, the challenges before us are many. 
It is critical that the public health strategies of the 1990's designed to meet these challenges 
receive top priority at all levels of government and in the private sector. 



CHRONOLOGY 
PUBLIC HEARINGS, INITIATIVES AND STATEMENTS 



1989 



August 3 



Meeting 



August 17 


Meeting 


September 6 


Statement 


September 18-19 


Hearings 


September 19 


Statement 


September 26 


Statement 


November 2-3 


Hearings 


November 7 


Statement 


December 5 


First Intei 



December 12 



Selection of Chairman and Discussion of Future Direction 
of the Commission - Washington, D.C. 

Selection of Executive Director - Washington, D.C. 

Support for Passage of the Americans with Disabilities 
Act 

Overview of the HIV Epidemic - Washington, D.C. 

Support for Increase in AIDS Funding in the FY '90 
Appropriations Bill 

Support for the Goal of Treatment on Demand for 
Drug Users 

Health Care, Treatment, Finance and International 
Aspects of the HIV Epidemic - Washington, D.C. 

Support for Continued Funding of Research on 
Effectiveness of Bleach Distribution 



First Interim Report to President Bush and the Congress 

Failure of U.S. Health Care System to Deal with HIV 
Epidemic 

Press Conference 

Commission Resolution Calls for End to Discriminatory 
Visa and Immigration Practices and Review of 
Immigration Policies Regarding Communicable Diseases, 
Particularly HIV Infection - Washington, D.C. 



1990 



January 4-5 



Working Group Hearing 



Federal, State and Local Responsibilities. To Examine 
the Roles and Responsibilities of Different Levels of 
Government in Responding to the AIDS/HTV Epidemic - 
St. Paul, Minnesota 



January 24-26 



Hearing and Site Visits 



Regional Aspects of the HJV Epidemic in Southern 
California, Los Angeles Area Community Based 
Organizations, Clinics, Hospice and Public Hospital - 
Los Angeles, California 



February 15-16 Working Group Hearing 



February 26-27 Site Visits 



March 6 



Testimony 



Social and Human Issues. To Examine the Relationship 
of Early Intervention and HJV Testing and Psychosocial 
Issues and HIV - Boston, Massachusetts 

To Look at Issues of HIV and AIDS Among the 
Homeless, Drug Users and Hemophiliacs - New York 
City, Newark, and Jersey City 

Chairman June E. Osborn, M.D. Testifies Before the 
Task Force on Human Resources of the Committee of 
the Budget of the United States House of Representatives 
on Meeting the Health Care Needs of People Living with 
HIV and AIDS 



March 6 



Statement Commission Endorses Principles and Objectives of 
Comprehensive AIDS Resources Emergency (CARE) 
Act of 1990 



March 9 



March 15-16 



March 15 



Letter Commission Writes President Bush Urging Him to 

Resolve Visa - HIV Controversy Before International 
Conferences In the United States in June and August 

Hearings Review of Executive and Legislative Branch Initiatives, 
Including the National Drug Control Strategy and the 
U.S. Bipartisan Commission on Comprehensive Health 
Care Report - Washington, D.C. 

Statement Despite Debate Among Epidemiologists, HIV Epidemic 
Will Have Greater Impact in 1990s than 1980s 



8 



March 15 



Working Group Summary Report on Federal, State, and Local 
Responsibilities 

Recommendations from January Meeting in St. Paul, 
Minnesota on the Roles and Responsibilites of Different 
Levels of Government 



April 16-17 
April 24 

May 7-8 
May 7 



Site Visits 



To Examine 
Communities 



Issues Surrounding AIDS in Rural 
Waycross, Albany and Macon, Georgia 



May 11 



May 24 



June 6 



June 27 



Second Interim Report to President Bush and the Congress 

Leadership, Legislation and Regulation 

Hearings Review of Current Research Activities, Particularly 
Clinical Trials - Washington, D.C. 

Letters Commission Writes Senate Majority Leader, Senator 

Mitchell, and Senate Minority Leader, Senator Dole, 
Urging Senate Consideration of the Comprehensive AIDS 
Resources Emergency (CARE) Act of 1990 

Statement Commission Endorses Principles and Objectives of AIDS 
Prevention Act (H.R. 4470) and Medicaid AIDS and HIV 
Amendments Act of 1990 (H.R. 4080) 

Letter Commission Writes Senator Kennedy and Senator Hatch 

Underscoring Support for the Americans with Disabilities 
Act, and Declaring the Amendment Concerning Food 
Handlers Bad Public Health Policy. 

Letters Commission Writes the Speaker of the House, 

Representative Thomas Foley, and the House Minority 
Leader, Representative Robert Michel, Urging Congress 
to Resist Attempts to Impose a Federal Mandate on 
States for Name Reporting 

Testimony Commissioner Donald S. Goldman Testifies Before the 
Subcommittee on Health and the Environment of the 
Committee on Energy and Commerce of the United 
States House of Representatives Regarding Immigration 
and Visa Policies, and the Rowland Bill (H.R. 4506) 



July 9-10 



Working Group Hearing 



Social and Human Issues. To Examine the Relationship 
of Early Intervention and HIV Testing from the Public 



Health Perspective, and the Range of Social and Human 
Services Needed by People Affected by the HIV/ AIDS 
Epidemic - Dallas, Texas 

July 17-19 Hearings Review of Current Health Care Personnel and Work 

Force Issues - Washington, DC 

July 30-31 Working Group Hearing and Site Visits 

Social and Human Issues. To Examine the Range of 
Social and Human Services Needed by People Affected 
by the HIV/ AIDS Epidemic, the Partnerships and 
Coalitions Necessary to Provide These Services, and the 
Social/Human Services Programs Established in the 
Seattle-King County Region - Seattle, Washington 

August 16-17 Site Visits and Hearings 

HIV Infection and AIDS in Correctional Facilities - 
New York 

August 21 Third Interim Report to President Bush and the Congress 

Research, the Work Force and the HIV Epidemic in 
Rural America 



10 



DOCUMENTS 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn. M.D. 



FOR IMMEDIATE RELEASE 
September 6, 1989 



Contact: Carlton Lee 
(202) 254-5125 



MEMBERS 

Diane Aniens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton. Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S.. M.P.H. 

Donald S. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsherg, M.D.. M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland. M.D. 

Hon. Louis W. Sullivan. M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



STATEMENT OF SUPPORT FOR AMERICANS WITH DISABILITIES ACT 



We, the Members of the National Commission on Acquired Immune 
Deficiency Syndrome (AIDS), strongly support passage of the Americans with 
Disabilities Act, legislation which would implement the key recommendation 
of the Presidential Commission on the Human Immunodeficiency Virus 
Epidemic. 

People living with AIDS and HIV infection, and those regarded as 
such, deserve the same discrimination protections as all people with 
disabilities. Such protections from discrimination are not only necessary to 
enhance the quality of life for people with AIDS and HIV infection, they are 

- as the Presidential Report and the Institute of Medicine have reported - 

- the linchpin of our nation's efforts to control the HIV epidemic. 

Thousands of Americans who should seek voluntary counseling and 
testing services and many who need life-prolonging medical treatment will not 
come forward if they believe that doing so could result in the loss of their job 
or lack of access to public accommodations. Legislation that is based not 
only on compassion but sound public health principles is a must if we are to 
reach and assist these individuals. 

We are extremely pleased that the majority of the United States 
Senate and the White House have made a bipartisan commitment to enact 
the Americans with Disabilities Act. We oppose any efforts to reduce the 
scope of coverage of the present bill, particularly with respect to HIV, the 
specific focus of this commission. The ADA will provide a clear and 
comprehensive mandate to greatly extend discrimination protections for 
people with disabilities. We are proud to endorse this landmark legislation. 



13 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn, M.D. 

MEMBERS 

Diane Ahrenx 
Scon Allen 



Press Release 
September 13, 1989 



Contact: Thomas Brandt 
202-472-9058 
(Temporary number) 



COMMISSION HOLDS FIRST SUBSTANTIVE HEARING 



The National Commission on AIDS, an independent body created by 



Hon. Dick Cheney 
Harion L. Dalton, Esq. 

Hon. Edward j. Dewinski Congress to oversee the national effort against the AIDS epidemic, will hold 

Eunice Diaz, M.S.. M.P.H. 

Donalds Goldman Es ^ ts ^ rst substantive hearing September 18 and 19 in Washington, D.C. 

Don C. DesJarlais, Ph. D. 
Larry Kessler 

charies Konigsberg. m.d.. m.p.h. voting members appointed by the Senate, five voting members appointed by 

Belinda Mason 



The new Commission, which took office on August 3, includes five 



David E. Rogers. M.D. 
Hon. J. Roy Rowland, M.D. 
Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Bwnes 



the House, two voting members appointed by the White House, along with 
the Secretary of Defense, the Secretary of Health and Human Services, and 
the Secretary of Veterans Affairs, who are non-voting members. 

The new chairman of the Commission, June E. Osborn, M.D., said, 
"I'm honored to serve on this Commission for which there is no precedent in 
terms of the blue ribbon expertise of its membership. It represents political 
diversity, the Black, Hispanic and gay communities, persons with AIDS, and 
of course many of the nation's top authorities on AIDS." 

Dr. David Rogers, the new vice chairman, said, "With this important 
meeting the Commission will begin laying its base. Our goal is not to re- 
invent a national strategy for AIDS, which was produced by the former 
Presidential Commission in 1988, but to focus our authority on select areas 

- more - 



14 



of greatest need." 

The law establishing the Commission calls for it to create a national consensus on 
major problem areas of the epidemic such as testing new drugs, financing of care and 
treatment, civil rights, prevention, education and epidemiological issues, among others. 

The Monday, September 18 session will open at 9 a.m. in the Caucus Room of the 
Cannon House Office Building, Capitol Hill, and will run until 5 p.m. 
At 10:30 a.m. Tuesday the Commission members will go to the Whitman-Walker Clinic, 
1407 S St., NW for briefings on the various programs offered by this community based, non- 
profit provider of AIDS and HIV services in metropolitan Washington. (News media 
interested in covering the site visit should go directly to Whitman- Walker). 

The Tuesday afternoon Commission meeting will begin at 1:30 p.m. and will be held 
at the General Services Administration Auditorium, 18th and F Streets, NW. 

The Commission will hear from a variety of AIDS and HIV (human 
immunodeficiency virus) experts. A panel of persons with AIDS will comment on the 
problems they have seen in the national response to the epidemic. There will be a separate 
discussion on the implementation of the nearly 600 recommendations in the 1988 report 
to President Reagan from the Presidential Commission on the HIV Epidemic, which was 
chaired by Admiral James Watkins. 

The Commission will also review pending or proposed legislation or policy 
recommendations affecting HIV or AIDS. 

The Commission first convened on August 3 for an organizational session and 
elected Dr. Osborn and Dr. Rogers as the chair and vice chair. A list of Commissioners, 
and an agenda for Sept. 18 and 19, are enclosed. 

# # # # 

15 



NATIONAL COMMISSION ON AIDS 
AGENDA 
SEPTEMBER 18-19, 1989 

Monday. September 18. 1989 

9:00 a.m. Opening Remarks, June E. Osborn, M.D., Chairman 

9:15 a.m. Mathilde Krim, Ph.D., American Foundation for AIDS Research 

9:45 a.m. PWA (People With AIDS) Panel 

Mr. Lou Katoff, Ph.D. 
Mr. Dave Johnson 
Ms. Amelia Williams 
Mr. Willie Bettelyoun 

11:00 a.m. BREAK 

11:15 a.m. C. Everett Koop, M.D., Former U.S. Surgeon General 

11:45 a.m. Jean McGuire, National Organizations Responding to AIDS (NORA) 

12:15 p.m. LUNCH 

1:30 p.m. Robert Newman, M.D., President and CEO, Beth Israel Medical Center 

2:00 p.m. Jim Allen, M.D., National AIDS Program Office (NAPO) 

2:30 p.m. Review of Recommendations by Presidential Commission on HIV Epidemic 
Identification of Areas of Focus and Attention by the National Commission 
Discussion of Format for Addressing Priorities (i.e. Working Groups) 

3:45 p.m. BREAK 

4:00 p.m. Discussion of Current Issues 

5:00 p.m. ADJOURN 



16 



Tuesday. September 19. 1989 

10:30 a.m. Tour the Whitman Walker Clinic, 1407 S Street 

12:00 p.m. LUNCH 



1:30 p.m. Presentation to Commission by General Services Administration General 
Counsel 



2:30 p.m. Follow-up to Issues and Plans discussed on Monday, September 18th 

Staff Briefing on Legislative Action and Commission Administrative 
Business 



3:30 p.m. ADJOURN 



17 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn, M.D. 



FOR IMMEDIATE RELEASE 
September 19, 1989 



Contact: Thomas Brandt 
(202) 755-2446 



MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Dia:, M.S.. M.P.H. 

Donald S. Goldman. Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D.. M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland. M.D. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



STATEMENT ON THE FY '90 APPROPRIATIONS 



We, the Members of the National Commission on Acquired Immune 
Deficiency Syndrome (AIDS), strongly support the increase in AIDS funding 
endorsed by both Houses of Congress and the Administration. While we 
believe that much work remains to secure adequate funding for the national 
battle against AIDS, we also recognize the fiscal challenges facing the 
Congress. 

We are particularly pleased that the Senate Committee on Appropriations has 
increased the total AIDS budget to accommodate humane and cost-effective 
programs designed to meet the burgeoning care needs resulting from the HTV 
epidemic. The Congress made clear the priority it places on the health care 
needs to provide access to lifesaving medical treatment to those who face 
poverty and death is not only a compassionate response to the crisis but a 
sound public health strategy for bringing the epidemic under control. The 
most compelling incentive for individuals to step forward for HTV counseling 
and testing is the availability of effective treatment and appropriate medical 
care. 

The Commission is most invigorated by the task of advising both the 
Administration and the Congress. It is a responsibility that we accept with 
great determination. Given the gravity of the HIV epidemic, we are 
fortunate to have an abundance of sound data on which to base our public 
health policy decisions. With this in mind, we urge the Congress to be 
deliberative in its policy-making processes and to resist fragmented 
approaches to public policy via amendments to the FY '90 Appropriations 
bill. 

The National Commission on AIDS stands ready to review and comment on 
proposals under consideration by the Congress for addressing the challenges 
presented by the HIV epidemic. 



18 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn, MD. 

MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S., M.PM. 

Donald S. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.PM. 

Belinda Mason 

David E. Rogers, MD. 

Hon. J. Roy Rowland, MD. 

Hon. Louis W. Sullivan, 'M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



FOR IMMEDIATE RELEASE 

September 26, 1989 



Contact: Thomas Brandt 
(202) 254-5125 



STATEMENT OF SUPPORT FOR TREATMENT ON DEMAND 

FOR DRUG USERS 



The new National Commission on AIDS strongly endorses the position 
taken by the Presidential Commission on the HIV Epidemic in its report of 
June, 1988 recommending the goal of treatment on demand for all drug users 
who request it. 

The Presidential Commission's position is articulated in the following 
statement found on page 95 of the report: 



"The Commission believes it is imperative to curb drug abuse, 
especially intravenous drug abuse, by means of treatment in 
order to slow the HIV epidemic. Because a clear federal, state, 
and local government policy is needed, the Commission 
recommends a national policy of providing treatment on 
demand for intravenous drug abusers." 



19 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202)254-5125 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn. M.D. 

MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton. Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz. M.S.. M.P.H. 

Donald S. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, M.D. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



PRESS RELEASE 
October 27, 1989 



Contact: Thomas Brandt 
202-254-5125 



JONATHAN MANN. ANTONIA NOVELLO TO ADDRESS 
NATIONAL COMMISSION ON AIDS 



Dr. Jonathan Mann, Director, World Health Organization Global 
Programme On AIDS, and Dr. Antonia Novello, who is under White House 
review to be U.S. Surgeon General, are among the witnesses scheduled to 
testify before the second set of hearings of the National Commission on AIDS 
on November 2 and 3. 

The Commission will be meeting in hearing room B of the Pan 
American Health Organization headquarters, 525 23rd St., NW in 
Washington, D.C. A complete agenda is attached. 

The major part of the new Commission's agenda will focus on health 
care, treatment and finance issues, and will include testimony from a number 
of national authorities. 

"We feel some urgency in turning to health care issues for they are 
likely to dominate the national agenda of the epidemic for the forseeable 
future," said Dr. June Osborn, Chairman of the Commission. 

Dr. David Rogers, Vice Chairman of the Commission, said, "It is my 
fond hope that the Commission can swiftly identify the two or three major 
problems in health care and help move the country towards national 

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20 



consensus solutions." 

Dr. Mann is expected to tell the Commission that internationally it will 
be much more difficult to fight the AIDS and HTV epidemic in the 1990s 
than in the 1980s as the virus accelerates its spread to new regions of the 
world and into new population groups, such as intravenous drug users, in 
countries where HTV is already well established. 

Dr. Novello, who is a national expert on HTV infection among infants 
and children, will be speaking on pediatric AIDS. 

The National Commission on AIDS, an independent body created by 
Congress to oversee the national effort against the HTV epidemic, took office 
on August 3. 

The 15-member Commission includes five voting members appointed 
by the Senate, five by the House, and two appointed by President Bush. The 
three non-voting members are the Secretary of Defense, the Secretary of 
Health and Human Services, and the Secretary of Veterans Affairs. 

# # # # 



21 



NATIONAL COMMISSION ON AIDS 

AGENDA 

NOVEMBER 2-3, 1989 

Pan American Health Organization Building 

525 Twenty-third Street, Northwest 

Washington, D.C. 

Thursday. 2 November 1989 

9:00 a.m. Opening Remarks 

9:05 a.m. INTERNATIONAL ASPECTS 

Jonathan M. Mann, M.D., M.P.H. - World Health Organization, Geneva 
Charles J. Carman - World Federation of Hemophilia, Montreal 

10:10 a.m. BREAK 

10:20 a.m. Remarks by Dr. June Osborn, Chair 

10:30 a.m. PUBLIC HOSPITALS 

Dennis P. Andrulis, M.P.H., Ph.D. - National Association of Public Hospitals, 
National Public Health and Hospital Institute 

11:00 a.m. TREATMENT ISSUES 

Peter Brandon Bayer, J.D., LL.M., M.A. - Hemophiliac with HTV infection, 

Baltimore 
Craig Kessler, M.D. - George Washington University Hospital, Washington, 

D.C. 

11:30 a.m. BREAK 

11:40 a.m. Mark Smith, M.D. - AIDS Services, Johns Hopkins University School of 

Medicine, Baltimore 

Ralph Hernandez - Person Living With AIDS 
Deborah Cotton, M.D., M.P.H. - Beth Israel Hospital, Boston 
James C. Welch, R.N. - AIDS Program Office, Division of Public Health, 

State of Delaware 

1:00 p.m. LUNCH 



22 



2:00 p.m. TREATMENT ISSUES FOR PRISONERS & DRUG USERS 

Theodore M. Hammett, Ph.D. - Abt Associates, Inc., Boston 
Nancy N. Dubler, LL.B. - Department of Epidemiology and Social Medicine, 
Division of Law and Ethics, Montefiore Hospital and Medical Center, NY 
Elizabeth Barton, M.P.S. - Samaritan Village, Inc., New York 

3:00 p.m. BREAK 

3:15 p.m. PEDIATRICS 

James M. Oleske, M.D. - Division for Allergy, Immunology and Infectious 
Diseases, Department of Pediatrics and Preventive Medicine, University 
of Medicine and Dentistry of New Jersey, Newark 

Antonia C. Novello, M.D., M.P.H. - National Institute of Child Health and 
Human Development, Washington D.C. 

Catherine Wilfert, M.D. - Duke University, School of Medicine, Durham 

4:15 p.m. ADJOURN 



Friday, 3 November 1989 

9:00 a.m. Opening Remarks 

9: 15 a.m. COST AND FINANCING 

Philip R. Lee, M.D. - University of California School of Medicine, Institute 

for Health Policy Studies, San Francisco 
Anne A. Scitovsky, M.A. - Health Economics Division, Palo Alto Medical 

Foundation/Research Institute 
Peter Arno, Ph.D. - Department of Epidemiology and Social Medicine, 

Montefiore Medical Center, New York 
Jesse Green, Ph.D. - Department of Health Policy Research, New York 

University Medical Center, New York 

10:45 a.m. BREAK 

11:00 a.m. INSURANCE 

Mary Ann Bally, Ph.D. - Department of Economics, George Washington 
University; Department of Health Care Sciences, George Washington 
Medical School, Washington, D.C. 



23 



11:30 a.m. STATE AND COMMUNITY 

Robert F. Hummel - New Jersey State Department of Health, Division of 

AIDS Prevention and Control 
Si Hoi Lam, M.D. - Hill Health Center, New Haven 
John S. Holloman, Jr., M.D. - National Association of Community Health 

Centers, Washington, D.C. 

12:30 p.m. LUNCH 

1:30 p.m FEDERAL AND FOUNDATION 

Paul Jellinek, Ph.D. - Robert Wood Johnson Foundation 

Samuel C. Matheny, M.D., M.P.H. - Health Resources and Services 

Administration, Department of Health and Human Services, Washington, 

D.C. 

2:30 p.m. COMMISSION BUSINESS 

Summary of the Hispanic/Latino Teleconference by Eunice Diaz and Patricia 
Mendoza 

3:00 p.m. ADJOURN 



24 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn. M.D. 

MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S., M.P.H. 

Donald S. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland. MD. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



Press Release 

Tuesday, November 7, 1989 



Contact: Thomas Brandt 
202-254-5125 



NATIONAL COMMISSION ON AIDS TAKES POSITION 
ON BLEACH AND HIV CONTROL RESEARCH 



The National Commission on AIDS today released a statement in 
support of research projects designed to determine the effectiveness of bleach 
distribution to intravenous drug users as a means to control the spread of the 
human immunodeficiency virus (HIV), which causes AIDS. The statement 
says: 

"The National Commission on AIDS strongly supports the 
continuation of research and demonstration projects involving 
the distribution of bleach to reduce the spread of HTV among 
intravenous drug users until the efficacy of this approach can 
be determined. This determination should be made by the 
Assistant Secretary for Health or the Secretary of Health and 
Human Services." 



Dr. June Osborn, Chairman of the Commission, said today that it is 
important to public health to know whether any of the various methods of 
distributing bleach to IV drug users can reduce the spread of HTV. Dr. 
David Rogers, Vice Chairman of the Commission, said, "In the United States 

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25 



the conquest of AIDS will be determined by how effectively we can contain the spread of 
HIV among drug users." 

Several experiments are underway in the United States to distribute common 
household bleach to IV drug users in the hope that it would be used to sterilize shared 
syringes and hypodermic needles. 

Currently there is an increase in the rate of new cases of HIV disease among IV 
drug users. IV drug users also account for many heterosexually transmitted cases of AIDS. 
Most infants who contract HTV disease are infected by their mothers who are either IV 
drug users or the sexual partners of IV drug users. 

Congress may deal with the bleach issue during reconsideration of the upcoming 
FY'90 appropriation bill for the Department of Health and Human Services. 

The National Commission on AIDS is an independent body created by Congress to 
oversee the national efforts against the AIDS epidemic and to make "recommendations for 
a consistent national policy concerning AIDS." 

Five members were appointed by the Senate, five by the House and two by the 
White House. In addition the Secretary of Defense, the Secretary of Health and Human 
Services, and the Secretary of Veterans Affairs are non-voting members. 



# ### 



26 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn. M.D. 

MEMBERS 

Diane Ahrens 
Scon Allen 
Hon. Dick Cheney 
Harlon L. Dalton. Esq. 
Hon. Edward J. Derwinski 
Eunice Diaz. M.S.. M.P.H. 
Donald S. Goldman. Esq. 
Don C. DesJarlais. Ph. D. 



PRESS RELEASE 

December 6, 1989 



Contact: Thomas Brandt 
202-254-5126 



COMMISSION RELEASES REPORT TO PRESIDENT BUSH 

The National Commission on AIDS today released its first report to 
President Bush that calls for urgent action by the White House to deal with 
an inadequate system of health care delivery and financing for persons with 
AIDS or HIV. 

Larry Kessler 

charies Komgsber g ,M.D..M.p.H. "In summary, a series of problems have resulted in a health care 

system singularly unresponsive to the needs of HTV infected people," the 
report says. 

The report also cites national obstacles to providing adequate health 
care and financing. These impediments include a growing air of complacency 
towards the epidemic, lack of a national plan for dealing with a health care 
system that is faltering even without the impact of AIDS, and a national drug 
strategy that fails to factor in the ominous potential for rapid spread of HIV 
among intravenous drug users. 

Even more alarming, the pattern of HIV infection is evolving and is 
now "reaching crisis proportions among the young, the poor, women and 
many minority communities," according to the report to President Bush. 



David E. Rogers. M.D. 
Hon. J. Roy Rowland, M.D. 
Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



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27 



The Commission also outlined five initial steps to begin solving the problems of 
health care delivery to the million or more people in the United States with HIV 
infection. 

These include: (1) "recognition that a crisis situation exists in many cities," (2) 
creation of a "flexible, patient-oriented, comprehensive system of care," (3) possible creation 
of regional centers of HIV care, perhaps modeled after the regional hemophilia treatment 
program, (4) creation of units that treat patients who have both HIV and drug addiction, 
(5) providing comprehensive health care services under one roof. 

Dr. June Osborn, Chairman of the Commission, said, "Finding durable solutions to 
problems identified by the Commission will take much hard work and cooperation. But the 
solutions also stand to benefit people far beyond the specific arena of HIV, for the health 
care system itself requires urgent attention." 

Dr. David Rogers, Vice Chairman of the Commission, said, "AIDS has spotlighted 
some of the most serious gaps in our ways of delivering medical care. Many chronic 
diseases which plague Americans demand more humane responses out of hospital systems 
of care. Developing such a system for those with HIV related illnesses should do much to 
improve medical care for all Americans." 

Though the Commission is not required to make a report to Congress and the White 
House until August, 1990, a decision was made to speak now because of the urgency of the 
health care delivery and financing issues, and because a national voice is essential 
to solving them. 

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28 



The National Commission on AIDS is an independent body created by Congress to 
advise Congress and the President on development of "a national consensus on policy" 
concerning the HTV epidemic. 

The Commission took office on August 3 and since then has consulted with dozens 
of experts, held four days of formal hearings, conducted extensive staff research and 
reviewed many issues at the full Commission level. 

The 15-member Commission includes five voting members appointed by the Senate, 
five by the House, and two appointed by President Bush. The three non-voting members 
are the Secretary of Defense, the Secretary of Health and Human Services, and the 
Secretary of Veterans Affairs. 



# # # # 



29 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn. M.D. 

MEMBERS 

Diane Ahrens 

Scon Allen 

Hon. Dick Cheney 

Harlon L. Dalton. Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz. MS., M.P.H. 

Donald S. Goldman. Esq. 

Don C. DesJarlais. Ph. D. 

Larry Kessler 

Charles Konigsberg. M.D.. M.P.H. 

Belinda Mason 

David E. Rogers. M.D. 

Hon. J. Roy Rowland. M.D. 

Hon. Louis W. Sullivan. M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



December 5, 1989 

President George Bush 
The White House 
Washington, DC 20500 

Dear President Bush: 

The official charter for the National Commission on Acquired Immune Deficiency 
Syndrome (AIDS) was signed on August 2, 1989. Since that time the National Commission has 
convened a series of hearings to solicit information and recommendations from experts in the 
field of medicine and public health policy to assist the Commission in meeting its statutory 
mandate of "promoting the development of a national consensus on policy concerning acquired 
immune deficiency syndrome." 

The testimony we recently heard on health care and financing was so compelling we felt it 
is vital to write to you now, rather than wait until our statutorily required annual report next 
August. In fact, the Commission will continue to bring these urgent matters to your attention 
and to the attention of Congress as we hear from the experts about the Human 
Immunodeficiency Virus (HIV) epidemic and what is needed to respond to it. 

The following represents the first of such reports which we hope will prompt 
appropriate action. 

Sincerely, 

"^pa^A, 9 S°y* — wuKsu-t. ((Li^^^ 



David E. Rogers, M.D 
Vice Chairman 



June E. Osborn, M.D. 
Chairman 



cc: 



The Honorable Robert C. Byrd 
President Pro Tempore of the Senate 

The Honorable George J. Mitchell 
Majority Leader of the Senate 

The Honorable Bob Dole 
Minority Leader of the Senate 

The Honorable Thomas S. Foley 
Speaker of the House of Representatives 

The Honorable Richard A. Gephardt 

Majority Leader of the House of Representatives 

The Honorable Robert H. Michel 

Minority Leader of the House of Representatives 



30 



National Commission 

on 

Acquired Immune Deficiency Syndrome 

Report Number One 



OVERVIEW 



"We don't have time to sit around and have this Commission 
live out its life and issue another report and have another 
report, another Commission.... We have to act and we have to 
act swiftly." 

This testimony was presented before the National Commission on Acquired Immune 
Deficiency Syndrome at a hearing held in Washington, D.C., November 2nd and 3rd of this 
year. The Commission convened a meeting of experts to examine the global, national and 
local challenges confronting the United States in the HIV epidemic. The message from the 
experts was clear and alarming: 

There is a dangerous, perhaps even growing, complacency in our country toward 
an epidemic that many people want to believe is over. 

• Far from over, the epidemic is reaching crisis proportions among the young, the 

poor, women and many minority communities. In fact, the 1990's will be much 
worse than the 1980's. 

The link between drug use and HIV infection must be acknowledged and addressed 
in any national drug strategy. 

There is no national plan for helping an already faltering health care system deal 
with the impact of the HTV epidemic. 

Over the coming months, the Commission intends to bring the message of experts 
who have studied the problems and proposed the solutions to those who have the power 
to act. The Commission believes it is time to match rhetoric with action. 

This letter is intended to outline the first of these messages from experts in the 
field of health care and financing: the public health care system in this country is not 
working well and nowhere is that more evident than for people with HIV infection and 
AIDS. While AIDS is not the cause of the health care system's disarray, it may well be 
the crisis that could pressure responsible national action to correct its serious shortfalls. 



31 



SCOPE OF THE PROBLEM 



To date, AIDS has claimed more American lives than the Vietnam War. Over the 
course of the next four years in this country, AIDS will likely claim an additional 200,000 
lives. It is estimated that by 1991 AIDS will be among the top ten leading causes of death 
in the United States. Nearly one-half of all AIDS cases reported to the Centers for 
Disease Control (CDC) through May 1989 were diagnosed in people 30 to 39 years old. 
By 1991, ten years after the first AIDS cases were reported, AIDS will far exceed all other 
causes of death for people between the ages of 25 and 44 years. In testimony before the 
Commission, it was stated that nine times more adults around the world may develop AIDS 
during the 1990's than have developed AIDS during the 1980's. 

The proportion of AIDS cases with intravenous drug use as a risk behavior has 
risen from 25 percent prior to 1985, to 30 percent in 1988. In New York City, alone, an 
estimated 100,000 intravenous drug users are HIV-infected. 

The HIV epidemic is not just a New York City or a San Francisco problem as some 
would like to believe. While it is true that before 1985, 44 percent of all cases of AIDS 
were diagnosed in the New York City or San Francisco areas, by 1988 this proportion had 
fallen to 25 percent. By 1991, it is expected that 80 percent of new AIDS cases will come 
from outside New York City and San Francisco. 

In increasing numbers, these new cases will be women and children. As one 
prominent pediatrician from New Jersey told the Commission, "As a society, we claim to 
protect and cherish our children, but in fact, we have placed women and children squarely 
in front of an onrushing HIV epidemic." 

The cumulative incidence of AIDS cases is disproportionately higher in Blacks and 
Hispanics than in whites. Fully 25 percent of all persons with AIDS in the United States 
are African-American and the number is growing. In fact, there has been, as one witness 
told the Commission, "a disproportionate impact of HIV on disenfranchised populations, 
gays, the poor, racial minorities, women, adolescents and drug users-populations having 
already less than optimal access to quality health care.... The development of a national 
care and treatment strategy will require a rethinking of our past effort." 



32 



ACCESS TO CARE 



Recent years have seen considerable advances in the development of new HIV- 
related drugs, including the prospect of treating HIV infection before symptoms develop. 
But scientific breakthroughs mean little unless the health care system can incorporate them 
and make them accessible to people in need. 

The belief that Medicaid will pay for the health care needs of the growing number 
of low income people with HIV infection and AIDS is, as one expert witness told the 
Commission, a "Medicaid fantasy." According to a 1987 U.S. Hospital AIDS Survey, almost 
one quarter of all AIDS patients have no form of insurance, private or public. Less than 
20 percent of the persons with AIDS treated in southern hospitals were covered by 
Medicaid, compared with 55 percent in the Northeast and 44 percent nationwide. 

For the medically disenfranchised, there is no access to a system of care. For those 
who have no doctor, no clinic, no means of payment, access to health care services is most 
often through the emergency room door of one of the few hospitals in the community that 
treats people with HTV infection and AIDS. Five percent of the nation's hospitals treat 
fifty percent of the people with AIDS. 

For those who are covered by Medicaid, access to care is better than for those who 
have no insurance at all. However, the obstacles to care under Medicaid funding can be 
insurmountable for many. One obstacle is the wide variation among states in Medicaid 
eligibility and scope of benefits. The Food and Drug Administration (FDA), under 
considerable public pressure, has struggled with mechanisms to speed new drugs to the 
market. Yet there is no requirement that Medicaid make even life-prolonging drugs such 
as zidovudine (AZT) available. 

Another obstacle to needed care for persons with HIV infection and AIDS who 
qualify for Medicaid is the low reimbursement rates. Stunning examples of Medicaid 
physician compensation rates far below those by private insurance or Medicare were 
illustrated during the Commission hearing. For example, a new patient intermediate office 
visit in New York City is compensated by Blue Cross at $78, by Medicare at $80, and by 
Medicaid at $7. One witness indicated that physicians in New York with large AIDS 
practices were reluctant to refer Medicaid patients for specialty consultations because of 
low levels of reimbursement-levels so low that several physicians said the few dollars at 
stake per office visit were not worth the time and paperwork to bill the Medicaid program. 

In summary, a series of problems have resulted in a health care system singularly 
unresponsive to the needs of HIV infected people: the initial appearance of HIV infection 
and AIDS in groups often shunned by the larger society - gay men, the poor, minorities, 
and intravenous drug users encouraged a slow response, a gross lack of training support for 
primary care physicians to treat people with HIV infection and AIDS, and serious 
disincentives for physicians to take Medicaid patients and perhaps poor people in general. 



33 



WHAT IS NEEDED? 



FIRST , frank recognition that a crisis situation exists in many cities that will require 
extraordinary measures to overcome. Significant changes must be made not only in our 
health care system but in how we think about the system and the people it is designed to 
serve. As one witness told the Commission, it can no longer be "business as usual." 

SECOND , the creation of a flexible, patient-oriented, comprehensive system of care, 
closely linking hospital, ambulatory, residential, and home care. Primary care physicians 
must be central to such a system. But if primary care doctors are to care for patients with 
HIV infection and AIDS, they need the financial, social and institutional support to assist 
them in managing complicated patients. 

THIRD , consideration of the creation of regional centers or networks of care, 
perhaps using the already existing regionalized hemophilia treatment program as a model. 
These centers would not serve as a replacement for the care provided by primary care 
physicians but would provide backup and consultation to help strengthen community based 
primary care. 

It is essential that everyone be afforded early intervention and access to care. In 
addition, the availability of backup and consultation from appropriate specialists is required 
to provide the assistance and encouragement primary care doctors need to see more people 
with HIV infection and AIDS. Regional centers should also provide the appropriate link 
with the hospital when hospital services are needed. 

FOURTH , create units which can treat patients who have both HIV infection and 
drug addiction. The availability of drug treatment on request is essential for responding 
to the combined HIV and drug epidemic that imperils not only drug users but also their 
sexual partners and children. 

Given the massive link between drug use and HIV infection, and the fact that there 
is an alarming increase in the number of new infections among intravenous drug users, the 
Commission wishes to go on record in expressing its surprise and disappointment that the 
White House National Drug Control Strategy mentions AIDS only four times in its ninety 
pages of text and not at all in its recommendations or discussions of how to allocate 
resources. The President's drug strategy simply must acknowledge and include HIV 
infection and AIDS. 

FIFTH , provide comprehensive health care services under one roof. Fragmented 
services create additional barriers to needed health care. Often mothers will seek health 
care services needed for their babies but are not able to then gain access to care for 
themselves. Health care services for women and children need to be provided in one 
place. For the homeless, housing and health care need to go hand-in-hand. This is true 
not only for those who are homeless today but for those who will become homeless 
tomorrow because of the HIV epidemic. 



34 



WHAT WILL IT COST? 



Estimates of the national costs of direct medical care for persons with AIDS in 1991 
range from $2.5 to 15.1 billion (in 1988 dollars). These estimates represent a small fraction 
of the total health care costs for the nation - from less than one to slightly more than three 
percent. We simply must be prepared to make these expenditures. 



WHO IS RESPONSIBLE FOR ACTION? 



In carrying out its mandate, the National Commission on AIDS will attempt to 
delineate clearly the roles and responsibilities of various levels of government and the 
private sector in responding to and managing the HIV epidemic. 

To date, there is no national policy or plan, and no national voice. Currently, as 
one witness testified, without the definition of roles each level of government points a 
finger at another and says it is their job. Clearly, managing the HIV epidemic is a 
responsibility which must be shared by all. 

Without federal leadership the states have assumed various degrees of responsibility 
for planning, coordination and the provision of care. Likewise some local governments 
have played key roles in determining how patient services could be provided and in 
demonstrating important models for service delivery. 

The role of the private sector voluntary and professional AIDS service organizations 
has been all important in managing the HIV epidemic to date. Foundations and 
corporations have also been important and their roles need better recognition and 
definition. 

"We must," the Commission was told, "move swiftly to bring the missing players to 
the table...this includes a greater presence of our federal, state and local governments in 
terms of leadership, financing and service delivery. It includes the support and cooperation 
of the insurance industry, employers, physicians and other medical providers, and last but 
profit-wise not least, the pharmaceutical industry as well." 

Responding to the challenge to bring the "missing players to the table," the National 
Commission on AIDS intends to do just that in hearings, working groups and other forums 
that can swiftly translate the facts into action and hold us all accountable for the national 
strategy that is long overdue. The time has come to define exactly what needs to be done, 
and measure how far we have come, and how much farther we still have to go. 

On behalf of all of the members of the National Commission on AIDS, we look 
forward to being able to continue to bring important information to your attention. 



35 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street. N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. O shorn, M.D. 

MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton. Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S. .M.P.H. 

DonaldS. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, M.D. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



Press Release 
December 12, 1989 



Contact: Thomas Brandt 
202-254-5125 



COMMISSION CALLS FOR CHANGES IN 
U.S. VISA AND IMMIGRATION POLICIES 



The National Commission on AIDS today called for a comprehensive 
review of U.S. visa and immigration laws relative to HIV and other 
communicable diseases, and an immediate end to practices that discriminate 
against or stigmatize those seeking visitors' visas to the United States. 

"Current practices," the Commission said in a resolution released 
today, "are counterproductive, discriminatory and represent a waste of 
resources...." 

Specifically, the Commission called for the Department of Justice to 
administratively order an end to the practice of marking passports of those 
with HTV infection who are granted waivers to enter the country. 

The Commission also called for immediate administrative steps to end 
the questioning of nonimmigrants about their HTV status while applying for 
visas. This would eliminate the current practice of stopping travelers who are 
carrying AZT, which is the only licensed anti-HIV drug, and blood products 
such as clotting factor which is used by hemophiliacs. In some cases travelers 
have been ejected from the United States because it was revealed, by 
inference or by direct questioning, that the traveler had HIV infection. 

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36 



Dr. June E. Osborn, Chairman of the National Commission, said, "There is no public 
health justification for current policies, they fly in the face of strong international opinion 
and practice, they lead to unconscionable infringements of human rights and dignity, and 
they reinforce a false impression that AIDS and HIV infection are a general threat when 
in fact they are sharply restricted in their mode of transmission." 

A number of scientific, medical and humanitarian organizations have criticized 
current U.S. visa practices. Sponsors of the Vlth International Conference on AIDS 
scheduled for San Francisco in June, 1990, and the XlXth International Congress on 
Hemophilia, scheduled for Washington, D.C., in August, 1990, have both said that some 
expected participants have announced their intention to boycott those meetings unless 
restrictions are changed. 

For the long term, the National Commission today also called for the Department 
of State, the Department of Justice and the Department of Health and Human Services to 
"conduct a comprehensive review of immigration policies as they regard communicable 
diseases, particularly HIV infection, focusing on public health needs." 

The review should include a study of the efficacy of the 1987 amendment that added 
HJV to the Public Health Service list of dangerous and contagious diseases. The list is used 
under the Immigration and Nationality Act (INA) to determine who can be excluded from 
the United States on public health grounds. 

The Commission has also called for liberal application of HIV waivers to applicants 
for legalization, refugee status, or permanent residency. 

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37 



The Commission has also said that when HIV testing is part of the immigration 
process, the appropriate Federal agencies must insure that standards are enforced for pre- 
and post-test counselling, confidentiality, and referrals for follow-up health care. 

The National Commission on AIDS, an independent body created by Congress to 
oversee the national efforts against the HIV epidemic and to make "recommendations for 
a consistent national policy concerning AIDS," took office on August 3. 

Five members were appointed by the U.S. Senate, five by the U.S. House of 
Representatives, and two by President Bush. In addition the Secretary of Defense, the 
Secretary of Health and Human Services, and the Secretary of Veterans Affairs are non- 
voting members. 



# # # # 



38 



NATIONAL COMMISSION ON AIDS 
RESOLUTION ON U.S. VISA AND IMMIGRATION POLICY 

December 1989 



WHEREAS, policies which govern the medical examination and exclusion of aliens 
from the United States based upon communicable disease should be determined by sound 
public health policies alone; and 

WHEREAS, these policies need a comprehensive and thorough review based only 
on public health needs, because other considerations, particularly myth, prejudice and social 
stigmatization, have been historically but inappropriately considered; and 

WHEREAS, the United States Public Health Service has stated that there is no 
evidence that the Human Immunodeficiency Virus (HIV) is spread through casual social 
contact; and 

WHEREAS, the World Health Organization (WHO) has concluded that screening 
of international travelers cannot prevent the introduction or spread of HIV infection; and 

WHEREAS, in its June 1988 report, the Presidential Commission on the HIV 
Epidemic concurred with the WHO that "the screening of international travelers for HIV 
infection would require an unjustified, immense diversion of resources from other critical 
programs of education, protection of the blood supply, and care"; and 

WHEREAS, current practices, particularly as they relate to HIV infection, are 
counterproductive, discriminatory and represent a waste of resources which could be better 
used in other ways; and 

WHEREAS, these practices, in particular, threaten the attendance of participants 
from all over the world at the Sixth International Conference on AIDS scheduled for San 
Francisco and the XIX International Congress of the World Federation of Hemophilia 
scheduled for Washington, D.C.; and 

WHEREAS, the promise of global cooperation on important issues of public health 
is being jeopardized by current U.S. immigration policy; and 

WHEREAS, the Department of Justice has extraordinary power and authority to 
grant waivers or to take such other action as may be in the best interests of the United 
States particularly where modification of such practices would cause no danger to the public 
health and no increased risk of disease spread; 

BE IT RESOLVED, that the National Commission on Acquired Immune Deficiency 
Syndrome recommends and calls upon the Administration to immediately implement the 
following: 



39 



1. The Department of State, the Department of Justice and the Department of Health and 
Human Services should conduct a comprehensive review of immigration policies as they regard 
communicable disease, particularly HIV infection, focusing on public health needs. 

2. Nonimmigrants, such as conference participants, should not be questioned regarding their 
HIV status as a condition for entry into the United States or for issuance of a visa. Similarly, 
persons carrying medications or products associated with HIV infection or hemophilia should not 
be subject to detention or questioning. 

3. The following practices should also be implemented pending the comprehensive overall 
review of immigration policies recommended above: 

A. For applicants who otherwise qualify for legalization asylum, or refugee 
status and who may be infected with HIV, standards for waivers should be liberally 
applied and they should be routinely granted particularly where family unity, 
humanitarian and or public interest grounds may exist. 

B. For applicants who otherwise qualify for permanent residency and who may 
be infected with HIV, similar waiver procedures should be adopted to the extent 
permitted by law. 

C. The Department of State, the Department of Health and Human Services 
and the Immigration and Naturalization Service should engage in cooperative efforts 
to institute policies and disseminate information targeted at notifying relevant alien 
groups of the availability of waivers and the circumstances under which they are 
granted. 

D. To the extent that HIV testing is part of any medical examination of 
applicants for permanent residency, refugee status or legalization, the Immigration 
and Naturalization Service and the Centers for Disease Control should carefully 
monitor training and compliance with their Instructions to Designated Physicians. 
Particular attention should be paid to pre and post-test counselling, confidentiality 
and appropriate referrals of persons for medical care and follow-up counselling. 

E. Confidentiality should be protected where HIV testing is part of the 
medical examination of applicants for visas, permanent residency, asylum, refugee 
status or legalization. Permanent markings in passports (including the use of codes 
which may become known) which in any way suggest that a person is infected with 
HIV or any other designated communicable disease should be prohibited. Where 
medical examinations take place, steps should be taken to safeguard all medical 
information (including HIV status), particularly from staff recruited locally in foreign 
countries. 



40 



NATIONAL COMMISSION ON ACQUIRED IMMUNE DEFICIENCY SYNDROME 

BACKGROUND PAPER 

AIDS AND IMMIGRATION: 

An Overview of United States Policy 

December 12, 1989 

Historical Background 1 

In 1879, in the midst of that century's wave of immigrants, restrictive immigration 
policies originated with the passage of "An Act to Prevent the Introduction of Infectious 
or Contagious Diseases into the United States, . . . ." Section 2 of the Act authorized the 
President to appoint a medical officer to inspect sanitary conditions on arriving vessels and 
at foreign ports. Contagious diseases were listed as asiatic cholera, yellow fever, plague, 
smallpox, typhus fever, and relapsing fever. The crew of an infected vessel was not allowed 
to come ashore. 

The eugenics movement of the late 1800's and early 1900's led to new restrictions. 
By 1891, medical inspections of immigrants at U.S. ports of entry began. A new law 
restricting admission of persons "suffering from loathsome or dangerous contagious disease" 
was passed. The Public Health Service (PHS) interpreted this to include venereal 



Information for this section was compiled from Staff of House Comm. on the Judiciary, 100th Cong., 2d 
Sess. Ser. No. 7, Grounds for Exclusion of Aliens Under the Immigration and Nationality Act: Historical 
Background (Comm. Print 1988); Wolchok. AIDS at the Frontier . 10 J. Legal Med. 127 (1989); Druhot, 
Immigration Laws Excluding Aliens on the Basis of Health. Va. J. Legal Med. 85 (1986). See also . Musto, 
Quarantine and the Problem of AIDS . 64 Milbank Q. 97 (1986). 



41 



infections. Only those immigrants who showed external signs of infection received full 
examinations for syphilis and gonorrhea. 2 

In 1952 the federal policy was rewritten as the Immigration and Nationality Act 
(INA). The INA codified into law the policy of excluding persons from entering the United 
States on the basis of being suspected of having certain diseases or disabilities. The 1952 
Act included a general exclusion for persons with dangerous contagious disease 3 , but 
specifically prescribed exclusions for aliens suffering from tuberculosis and leprosy, two 
diseases which traditionally subject those afflicted to stigmatization. 4 In 1961 the statute 
was updated and modified to reflect current medical information, but its focus on diseases 
associated with social stigmatization persisted. The statute provided for the exclusion of 



2 A. Brandt. No Magic Bullet. 20 (1986). 

Over 200 communicable diseases are known ranging from AIDS to zygomycosis (a fungal infection). 
How a given disease is transmitted and the risk that, if transmitted, it will cause harm vary greatly. The 
American Public Health Association has categorized such diseases into 5 classes with subclasses. They range 
from Class 1 (e.g. polio and plague) to Class 5 (e.g. the common cold). Tuberculosis, gonorrhea, leprosy and 
measles are classified as Class 2B diseases which should be reported to local public health authorities by the 
most practicable means but which need not be forwarded to higher public health authorities on an emergent 
basis. Control of Communicable Diseases in Man (A. Benenson ed., 14th ed., 1985). 

Susan Sontag's Illness as Metaphor (1978) explains how tuberculosis was "a disease regarded as a 
mysterious malevolency." Pointing out that in Stendahl's Armand (1827), the hero's mother refuses to say 
'tuberculosis' for fear that merely uttering the word will hasten her son's death, Sontag shows how "[t]he 
metaphors attached to TB . . . imply living processes of a particularly resonant and horrid kind." 

"TB was — still is — thought to produce spells of euphoria, increased appetite, exacerbated sexual 
desire." Conversely, "TB is often imagined as a disease of poverty and deprivation — of thin garments, thin 
bodies, unheated rooms, poor hygiene, inadequate food." Moreover, "people could believe that TB was 
inherited . . . and also believe that it revealed something singular about the person afflicted." As Kafka wrote 
to Felice, "Secretly I don't believe this illness to be tuberculosis . . . but rather a sign of my general 
bankruptcy." 

Sontag shows how tuberculosis has been used as a metaphor for all that is "unqualifiedly and 
unredeemably wicked. It enormously ups the ante. Hitler, in his first political tract, an anti-semitic diatribe . 
.. , accused the Jews of producing 'a racial tuberculosis among nations.'" S. Sontag, supra , at 5-9, 13-19, 38, 
44,61-63. 

The irony is, of course, that today tuberculosis is not contagious with current treatment. See, School 
Bd. of Nassau County. Florida v. Arline. 481 U.S. 1024, 107 S. Ct. 1123, 94 L. Ed.2d 307 (1987) (application 
of Section 504 of the Rehabilitation Act to communicable diseases). 

Likewise, public and institutional responses to persons with leprosy (also known as Hansen's 
Disease) have subjected those with the disease to social stigmatization, despite the availability and success of 
treatment. 



42 



"aliens who are afflicted with any dangerous contagious disease" 5 by rendering them 
ineligible to receive visas. 6 

The statute charges the PHS with designating the diseases falling under the purview 
of the statute and thus used for exclusionary purposes. In 1963, twenty-one diseases were 
listed in the PHS Manual for the Medical Examination of Aliens. By 1987 the PHS listed 
only seven diseases, all associated with social somatization, for the purposes of INA 
§212(a)(6). Five were and remain venereal diseases: chancroid, gonorrhea, granuloma 
inguinale, lymphogranuloma venereum and syphilis (infectious stage). The other two 
diseases were and remain infectious leprosy and active tuberculosis. 

On April 23, 1986, PHS published a proposed rule amending its regulations by 
adding AIDS to the list of dangerous contagious diseases. The stated rationale for the 
new rule was that "it would be anomalous to have diseases such as chancroid and 
lymphogranuloma venereum on such a list and not include AIDS. AIDS is added to the 
list because it is a recently defined sexually transmitted disease of significant public health 
importance." 7 It, too, is a disease associated with social stigmatization. 

On March 27, 1987, the New York Times reported that PHS was considering a rule 
which would add the AIDS exclusion under INA §212(a)(7) instead of under INA 
§212(a)(6). INA §212(a)(7) bars aliens certified as having a "physical defect, disease or 
disability," which may affect their ability to earn a living. 8 This "more flexible approach 



5 The term "alien" refers to a person not a citizen or national of the United States. Under 8 U.S.C. 
§1101(a)(3) a "national" can be a citizen or a person who owes permanent allegiance to the United States. 

6 I.NA. §212(a)(6), 8 U.S.C. §1182(a)(6) (1982). 

7 51 Fed. Reg. at 15,355. 

8 Pear. U.S. to Pursue Proposal to Bar Aliens with AIDS. N.Y. Times, March 27, 1987, at Al. 



43 



appeared to reflect the concern expressed by some that characterizing AIDS as a 'dangerous 
contagious disease' could result in discrimination against high-risk groups, including 
homosexuals." 9 

On June 8, 1987, the PHS added "acquired immunodeficiency syndrome (AIDS)" 
to the list of dangerous contagious diseases. Prior to the issuance of PHS final regulations, 
however, Congress passed the Supplemental Appropriations Act of 1987. 10 Section 518 of 
the Act, popularly known as the Helms Amendment, directed the President to add the 
"human immunodeficiency virus (HIV) infection to the INA list of diseases on or before 
August 31, 1987." Accordingly, the Department of Health and Human Services (HHS) 
issued new rules substituting HIV infection for AIDS on the list. 11 PHS regulations require 
that medical examinations of aliens include a chest X-ray examination for tuberculosis and 
serologic tests for syphilis and HIV infection for all applicants for permanent status. 
Nonimmigrants are not subject to mandatory tests for the HIV antibody. The Immigration 
and Naturalization Service (INS) may, however, require a serologic test of a nonimmigrant 
applying for a visa who is suspected of being HIV seropositive. Similarly, aliens under 15 
years of age are not subject to testing unless there is reason to suspect infection. Those 
who test positive for HIV may be excluded from the United States and must be denied 
permanent resident status. 12 



House Comm. on the Judiciary, supra note 1, at 85. 

10 Pub. L. 100-71, H.R. 1827 (July 11, 1987). 

Because of the administrative difficulties, however, the effective date of the new regulations was 
deferred until December 1, 1987. 

12 51 Fed. Reg. 32,540-44 (1987); 52 Fed. Reg. 21,607 (effective Dec. 1, 1987). Notably, however, 
applicants under the Amnesty Program of the Immigration Reform and Control Act of 1986 (IRCA) are not 
automatically excluded but may apply for a waiver. 



44 



Implementation and Current Practice 

The Immigration and Naturalization Service's actual implementation of INA §212(a) 
varies depending on the nature of the status the alien is seeking: i.e. nonimmigrant, 
permanent resident, legalization, refugee. The practices may also vary with the particular 
consular officer or immigration inspector. 

A. Nonimmigrant 

Nonimmigrants who seek to enter the United States as tourists, students or 
temporary visitors are excludable under INA §212(a)(6) but are not routinely tested for 
HIV antibodies. 13 At the discretion of a consular officer overseas or an immigration 
inspector in the U.S., visitors suspected of being HIV positive may be referred for a medical 
examination and a serologic blood test. 14 Those who test positive for HIV, if overseas, will 



All visitors to the U.S. are required to fill out an immigration inspection card upon arrival to a U.S. 
port of entry. One question on this card asks whether the individual has a "dangerous contagious disease." 
The same question is asked on the Nonimmigrant Visa Application Form. If someone who is HIV positive 
answers this question "yes" they have admitted their excludability and are subject to exclusion. If someone 
answers "no" and is later determined to have HIV, this could be considered a "misrepresentation of material 
fact" which under INA §212(a)(19) is an independent ground for exclusion. Under INA §212(d) an exclusion 
based on misrepresentation or fraud may be waived, however, in practice such a waiver is virtually 
unobtainable. There are thirty three separate grounds for exclusion. One of particular concern is INA 
§212(a)(4). Under this section gay and lesbian aliens have historically been excludable. This section prohibits 
entry to persons "afflicted with psychopathic personality, or sexual deviation, or a mental defect . . . ." Under 
current INS policy, an alien may not be questioned regarding his or her sexual preference unless he or she 
makes some voluntary affirmative statement about being gay or provides information that brings up the issue. 

INA §232 authorizes the "Detention of Aliens for Observation and Examination" for the purpose of 
determining whether they are afflicted with a "dangerous contagious disease." The regulations further state 
that individuals may be detained for a medical examination whenever there are reasonable grounds for 
believing" that they are excludable under one of the health related grounds. Conference participants at the 
meeting of the XIX Congress of the World Federation of Hemophilia (WFH) in Washington, D.C. and at 
the Sixth International AIDS Conference in San Francisco, both in the summer of 1990, are subject to this 
provision of the INA. For persons with hemophilia the problem is particularly acute, as many travellers will 
necessarily be carrying blood products with them and wearing medic-alert bracelets. As with any visitor 
traveling with AZT or other attention-catching items, persons with hemophilia will quickly be identified as 
suspect for HIV infection and subject to exclusion. Many members of the hemophilia community, including 
both patients and physicians, are concerned about the U.S. requirements that obligate persons to declare 
their HIV status and thereby single them out for discrimination. Such fears have compelled hemophilia 
organizations of patients and physicians in Canada, the United Kingdom, the Federal Republic of Germany 
and Greece, among others, to call for a boycott of the WFH Conference and all non-essential travel to the 



45 



not be granted a visa. If already at a U.S. port of entry, they will be detained and given 
the option to return to their place of origin voluntarily or otherwise to pursue their case 
before an immigration judge in exclusion proceedings. 15 A nonimmigrant visitor may, 
however, apply for a waiver from the Attorney General. 16 The discretionary authority of 
the Attorney General will not be used unless the applicant can establish that: 

"(1) the danger to the public health of the United States created by the alien's 
admission to the U.S. is minimal, (2) the possibility of spread of the disease 
created by the alien's admission to the U.S. is minimal and (3) there will be 
no cost incurred by any level of government agency of the U.S. without prior 
consent of that agency." 

Waivers must be applied for at the time of application for a visa at a consulate or 

in certain circumstances before embarkation to the U.S. or at the port of entry from the 

INS district director. If a waiver is granted, the alien's passport is stamped with a visa that 

contains the code "212(d)(3)(a)(6)". This code indicates that a waiver has been granted for 

the statutory exclusion category corresponding to the dangerous contagious disease 



U.S. Similar concerns have guided the Scandinavian AIDS and HIV organizations, the League of Red Cross 
and Red Crescent Societies among others to withdraw from the VI International AIDS Conference. 

Besides the well-publicized Hans Verhoef case, in which a citizen and health educator of the 
Netherlands was detained for six days after admitting to having HIV infection when a Customs luggage check 
uncovered AZT, several other incidents involving detainment of visitors by INS on the basis of HIV infection 
have been reported. In June 1989, Knud Jorgensen, a Danish AIDS researcher was detained in Boston after 
admitting his HIV status to INS officials. According to Jorgensen, officials at Logan Airport asked him if he 
had HIV infection after he told them he was going to the Montreal Conference. After two hours, Mr. 
Jorgensen was allowed to continue onto Montreal. On the same day, Henry Wilson, a leader of a British 
Coalition of PWAs was detained by INS officials in Minneapolis-St. Paul. Wilson's purpose of visiting the 
U.S. was to participate in a six month study of the drug CD-4. Mr. Wilson returned to London. Knox, INS 
Policy on Foreigners with AIDS Fuel Outrage as Two are Detained. Boston Globe, June 8, 1989. Other 
incidents have apparently been more newsworthy in the domestic press of the country of the excluded or 
detained visitor and have not been the subject of much notoriety in the U.S. 

The INS estimates that this procedure takes a minimum of 30 to 60 days (except in urgent 
circumstances) and therefore suggests that application be made especially early for those with HIV infection. 



46 



provision. This information regarding excludability under INA §212(a)(6) is also recorded 
in the U.S. embassy records in the alien's home country. 

In a May 25, 1989 news release and directive issued to consular and immigration 
officers, the INS asserted that under the so-called balancing test described above, short 
term (30 days or less) nonimmigrants who are HIV positive should be provided waivers 
and temporary admission if the applicants establish that their entry into the United States 
would confer a public benefit which outweighs any risk to the public health. Under that 
policy a sufficient public benefit included "a showing that the short term nonimmigrant will 
be attending academic or health related activities (including seeking medical treatment), or 
conducting temporary business in the U.S." In addition visits to close family members in 
the U.S. would be considered a sufficient public benefit. However, entry into the United 
States essentially for tourism reasons alone was not sufficient to be deemed a public 
benefit. 17 

B. Permanent Resident 

At the other end of the spectrum, are those aliens applying for permanent resident 
status. For these aliens no waivers are available except under the Immigration Reform and 
Control Act. Every alien applying for permanent resident status is required to undergo a 



17 A letter dated September 29, 1989, from the United States Embassy to the President of the Danish 
Association of Social Workers announced new INS guidelines on the issue of tourism and 30 day stays. 
According to the letter, the May guidelines referred to above were found "too restrictive" as they "ended up 
meaning that a child who had contracted AIDS at birth or through a blood transfusion, and who obviously 
would pose little danger of spreading the infection, would be unable to go with his family on a vacation in the 
U.S." Apparently in response to complaints about the 30-day limit for waivers, which make extended medical 
treatment in the U.S. for persons with AIDS impossible, the INS will now allow longer visits if a person with 
AIDS has a compelling case. The example cited in the letter is one of an "AIDS sufferer who would be 
staying in a hospital while undergoing treatment or in a clinic while participating in a research program." 
Such a person would, under the reasoning in the letter, pose a minimal public health risk, while possibly 
offering a substantial public benefit. 



47 



medical examination and serological test for HIV. Aliens who are already in the U.S. and 
who are denied permanent residence may at the discretion of the INS be classified under 
the category of "deferred status" which temporarily enables them to remain in the U.S. 
pending an order of deportation. The informal practice of categorizing persons denied 
residency under the rubric "deferred status" has been used in some cases to avoid deporting 
parents, children and spouses of U.S. citizens. 

C. Legalization 

In 1986, Congress passed the Immigration Reform and Control Act (IRCA) which 
permits undocumented migrants present in the United States since 1982, to regularize their 
status to that of permanent residents and imposes penalties on employers who knowingly 
hire undocumented workers. Applicants for legalization who test positive for HIV are 
excludable under INA §212 (a)(6). IRCA, however, provides that applicants for 
legalization may be granted waivers where the applicant can show compelling family unity, 
humanitarian and/or public interest grounds for waiver. 18 Applicants for legalization must 
have a medical examination and serologic test. The examination and the test are valid only 
if conducted by an INS designated civil surgeon. Unlike other immigrants, HIV infection 
is not in itself a grounds for the deportation of legalization applicants, although it is a 
ground for excludability. Information submitted in support of legalization applications is 
confidential and may not be used for any purpose other than determining legalization under 
IRCA §210(c)(5). 



18 I.R.CA. §245 A(d)(B) and §210(2)(B). 



48 



Under the Cuban-Haitian adjustment program, 19 persons from Cuba and Haiti who 
entered the U.S. before 1980 may adjust their status to that of a permanent resident. 
However, the IRCA does not contain a waiver provision for these aliens if they test positive 
for HIV. 

D. Refugees 

In 1980, Congress amended the INA by adding the Refugee Act. Under this 
provision, the Attorney General has discretionary authority to waive excludability for 
refugees who test positive for HIV. Refugee status is granted to persons applying for 
relief abroad, that is, these individuals are not generally present in the U.S. at the time of 
application. In general, the refugee population is made up of individuals fleeing economic 
and political oppression and persecution in their home country. In 1987, there were an 
estimated 10 million refugees throughout the world. 20 It is estimated that in the current 
fiscal year some 74,000 refugees will be admitted to the United States. 21 In testimony 
before the Presidential Commission on the HIV Epidemic, a representative of the Bureau 
for Refugee Programs expressed his concerns regarding the sensitive status of refugees who 
exist in tenuous circumstances in their country of first asylum as they flee persecution in 
their home countries. He pointed out that unlike prospective immigrants, refugees do not 



19 I.R.CA. §202. 

^n responding to the PHS notice of proposed rule making that would have added AIDS to the list of 
dangerous contagious diseases, the Department of State declared all refugees of concern to the United 
States, but identified refugees of particular concern to the U.S. as "among others, those who fought with the 
United States in Southeast Asia; boat people who have risked victimization by pirates to escape Vietnam; 
Afghans who fled after the 1979 Russian invasion; Soviet Jews; Cuban political prisoners; refugees from 
Eastern European totalitarian regimes; refugees escaping civil war-torn Ethiopia; and religious minorities 
threatened by religious totalitarianism in Iran." 

21 Refugee Reports, May 19, 1989, at 9. 



49 



remain citizens of their home countries with recourse to those countries' institutions. 
Refugees have no home to which to return. 22 
Public Health Perspective 

In May of 1987, the 41st World Health Assembly (WHA) adopted resolution WHA 
41.24 urging member States to "protect the human rights and dignity of HIV infected 
people and people with AIDS, and of member population groups, and to avoid 
discriminatory action against and stigmatization of them in the provision of services, 
employment and travel." Further, a consultation of experts convened by the World Health 
Organization's (WHO) Global Programme on AIDS concluded in a March 2-3, 1987 report 
that HIV screening of international travellers would be ineffective, impractical and 
wasteful. 23 Specifically, these experts emphasized that "since HIV infection is already 
present in every region and in virtually every major city in the world, even total exclusion 
of all travellers (foreigners and citizens travelling abroad) cannot prevent the introduction 
and spread of HIV." The experts based their opinion in part on the number of persons 
who cross international borders each year, 24 the natural history of HIV infection, 25 and the 



00 

See Appendix. Note also that as a matter of policy the United Nations High Commissioner for 
Refugees and the Department of State have taken as their point of departure the recognition that refugees 
are not an at risk group for infection with the HIV virus. In its response to the PHS notice of proposed rule 
making referred to supra note 20, at 8, the Department of State wrote, "It is also important to recognize that 
epidemiological experts both inside and outside of the Government agree that most of the refugee 
populations that would be tested under this proposed rule — i.e. . those designated " of special humanitarian 
concern" to the United States by the President and hence eligible for consideration for admission to the 
United States- exhibit a very low incidence of the AIDS virus." See U.N. High Comm. for Ref. Inter-Office 
Memorandum No. 21/88. 

The PHS claims that U.S. policy of screening aliens for HIV does not conflict with the report of the 
WHO consultation on international travel. According to the PHS the "consultation addressed issues related 
to international travel and not to decisions individual countries might make with respect to the admission of 
permanent immigrants" or visa applications. Supplementary Information, 42 CFR 34. 

Hundreds of millions of persons cross international borders each year, by boat, air, rail, motor vehicle 
and foot. 



50 



knowledge that tests to determine HTV infection are not perfect and, thus, unlikely to 
identify persons recently infected and likely to generate a significant number of false 
positive results in populations with relatively few HTV infected people. 26 Rather than 
screening international travellers the World Health Organization encourages nations to 
apply their resources to preventing HTV transmission based on information and education. 27 
According to the International Health Regulations of the World Health 
Organization, 28 the only health document that can be required from international travellers 



The term "natural history of HIV infection" is used here to refer to two separate phenomenon: 1) the 
clinical manifestations of the disease which are relatively non-specific, including research evidence that 
indicates that antibodies to HTV do not commonly appear before six weeks post-infection; and 2) the modes 
of transmission: sexual contact with an infected person, exposure to infected blood products (through 
transfusion or sharing of needles with IV-drug user), and perinatal transmission from an infected woman to 
her fetus. 

The basis for this objection is clearly explained in Allin, The AIDS Pandemic: International 
Restrictions and the World Health Qrpanization's Response. 28 Va. J. Int'l L. 1043, 1058 (1988). "The first . 
. . (ELISA) test was designed for large scale screening of blood donated to blood banks and hospitals. Cut- 
points on ELISA tests are set quite low to eliminate any possibly infected blood from the donor pool. When 
the same test is used to test the presence of antibodies in individuals, the low cut-points result in a high rate 
of false positives. To eliminate false positives, individuals who test positive usually undergo the second type 
of test, called the Western Blot. The Western Blot test is very expensive and labor-intensive; it is not 
designed for large scale screening programs." The number of false positives varies with the level of risk of 
the population tested. With a low risk population, the false positive rate is likely to be much higher than with 
a middle or high risk population. Critics add that it is hard to control for the accuracy of foreign labs in the 
case of travellers applying for visas at an embassy abroad and that the more expensive Western Blot test may 
not be available. 

27 Report of the Consultation on International Travel and HIV Infection, 2-3 March 1987 World Health 
Organization WHO/GLO/87.1. Apparently, in 1987 in response to an announcement by a European country 
to screen travellers for HIV, the WHO announced that it would not hold meetings in any country that 
required an HIV screening for meeting participants. The WHO did not, however, issue a resolution 
declaring this policy, thus the practice has never been institutionalized. See Cong. Res. Serv., Issue Brief 
Update 6 (April 5,1989). In 1987, the 99th meeting of the Executive Committee of the Pan American Health 
Organization (PAHO) adopted a resolution recommending that PAHO urge member countries "to continue 
permitting freedom of international travel, without restrictions based on human immunodeficiency virus 
(HIV) infection status." 

The International Health Regulations adopted by the WHA in 1951 addressed four communicable 
diseases: plague, cholera, yellow fever, and small pox In 1969 this list was expanded to include louse-borne 
typhus, louse-borne relapsing fever, influenza, poliomyelitis and malaria. As a primary means of controlling 
disease and encouraging cooperation between countries, the Regulations instituted an elaborate notification 
system which obligated member states to make detailed reports to WHO on the incidence of these diseases. 
In keeping with the goal of minimizing restrictions on international traffic the Regulations forbade 
requirements of health documents in international travel, with an exception in the case of yellow fever. See 



51 



is a valid vaccination certificate against yellow fever. Under this regulation no country may 
refuse entry into its territory a person who fails to provide a medical certificate stating that 
he or she is not carrying the HIV virus. Thus an international travel policy that detains 
suspected carriers of the virus, refers them to medical evaluation and refuses them entrance 
into a country based on HTV status or failure to submit to a medical examination violates 
this agreement. 29 

In the United States, the PHS has explicitly stated, "There is no evidence that the 
virus is spread through casual social contact (shaking hands, social kissing, coughing, 
sneezing, sharing swimming pools, bed linens, eating utensils, office equipment, being next 
to or served by an infected person)." 30 And, further, that "HIV has three main modes of 
transmission: sexual contact with an infected person, exposure to infected blood or blood 
products (mainly through needle-sharing among IV-drug users), and perinatal transmission 
from an infected woman to her fetus or infant." 31 

As early as 1987, when the first proposed rule to add AIDS to the list under INA 
§212(a)(6) was announced, public health experts have questioned the efficacy of screening 
international travellers and immigrants. Public health experts predicted the plan to test 
about 400,000 immigrants a year to be "unlikely to stem the spread of acquired immune 



Allin, supra note 24, at 1049-1050. 

29 Chin,"fflV and International Travel" in Global Impact of AIDS, 63 (1988). 

on 

U.S. Department of Health and Human Services, Public Health Service, Information /Education Plan 
to Prevent and Control AIDS in the United States. 9 (March 1987). The Institute of Medicine has stated 
further that,"Finally, additional data from studies of health care workers (CDC,1988d), nonsexual household 
contacts (Friedland and Klein, 1987), and insect bites (CDC,1986) all support the conclusion that HIV is not 
transmitted by casual contact or insect bites. A change in HIV transmission modes would be biologically 
unprecedented in a virus. There is no evidence that HIV is capable of such a change." Confronting AIDS 
Update 1988, 39 (1988). 

31 C.D.C, 38 Morbidity and Mortality Weekly Report, May 12, 1989, No. S-4 at 2. 



52 



deficiency syndrome." 32 The State Department's own estimate that only 250 immigrants 
would test positive for HTV infection annually paled in comparison to the PHS estimate 
that 1 million to 1.5 million Americans are infected. 33 That the United States has more 
reported cases of AIDS than any other country seemed to belie any thoughtful belief that 
screening immigrants and visitors would affect the spread of AIDS in the United States. 34 
Just recently, the American Bar Association (ABA), adopted the following 
resolution: 35 



Legalization pursuant to the Immigration Reform and Control Act should 
not be denied to otherwise-qualified aliens solely because of HTV status. 36 

Non-immigrant visitors to the United States should not be barred solely 
because of HTV status. 37 

Otherwise-qualified political asylees and refugees should not be barred from 
the United States solely because of HIV status. 



Okie, Public Health Experts Raise Doubts on Plan to Test Immigrants for AIDS. Washington Post, 
July 15, 1987, at A14. 

33 103 J. of U.S. Pub. Health Serv. 3 (1988). 

See Comments of Allan Brandt, Lincoln Chen, Donald Henderson, Joyce Lashof, June Osborn, and 
Sheldon Wolff on Proposed Regulation for Adding HIV Infection to the List of Dangerous Contagious 
Diseases of the INA. 

Adopted at the August, 1989 annual meeting of the ABA. 

The ABA pointed out that not only would the humanitarian and economic intent of IRCA be 
frustrated by exclusion but also that "rejected applicants would probably be driven underground with then- 
disease and would continue to live in fear of seeking help from public authorities." 

The ABA pointed out that as to non-immigrant visitors, exclusionary practices would invite retaliation 
from other countries and would be virtually unenforceable. Just as the United States initially categorized 
travel to and from Haiti as a "high risk behavior," much of the rest of the world views travel to the United 
States as a form of "high risk behavior." 



53 



The Attorney General should have the authority to waive exclusions based 
on HIV status for immigrants on a case-by-case basis. 38 

In its June 1988 report, the Presidential Commission on the HIV Epidemic 
concurred with the World Health Organization that "the screening of International travelers 
for HTV infection would require an unjustified, immense diversion of resources from other 
critical programs of education, protection of the blood supply, and care." "At best," the 
Commission concluded, "border screening programs would only briefly retard the spread of 
HIV." In its recommendations the Commission warned against the implementation of 
ineffective and cumbersome regulations. 39 
Resolution 

WHEREAS, policies which govern the medical examination and exclusion of aliens 
from the United States based upon communicable disease should be determined by sound 
public health policies alone; and 

WHEREAS, these policies need a comprehensive and thorough review based only 
on public health needs, because other considerations, particularly myth, prejudice and 
social stigmatization, have been historically but inappropriately considered; and 

WHEREAS, the United States Public Health Service has stated that there is no 
evidence that the Human Immunodeficiency Virus (HIV) is spread through casual social 
contact; and 



The ABA suggestion of case-by-case determination does not apply to non-immigrant visitors because 
under their recommendation such visitors should not be subject to exclusion in any event based on HIV 
status. 

The Presidential Commission also recommended that the Center for Disease Control expand its 
booklet, "Health Information for International Travel," to include information on HIV and called for the 
State Department, Health and Human Services and the Immigration and Naturalization Service to reevaluate 
the screening policy as it relates to refugees twelve months after implementation. 



54 



WHEREAS, the World Health Organization (WHO) has concluded that screening 
of international travelers cannot prevent the introduction or spread of HIV infection; and 

WHEREAS, in its June 1988 report, the Presidential Commission on the HIV 
Epidemic concurred with the WHO that "the screening of international travelers for HIV 
infection would require an unjustified, immense diversion of resources from other critical 
programs of education, protection of the blood supply, and care"; and 

WHEREAS, current practices, particularly as they relate to HIV infection, are 
counterproductive, discriminatory and represent a waste of resources which could be better 
used in other ways; and 

WHEREAS, these practices, in particular, threaten the attendance of participants 
from all over the world at the Sixth International Conference on AIDS scheduled for San 
Francisco and the XIX International Congress of the World Federation of Hemophilia 
scheduled for Washington, D.C.; and 

WHEREAS, the promise of global cooperation on important issues of public health 
is being jeopardized by current U.S. immigration policy; and 

WHEREAS, the Department of Justice has extraordinary power and authority to 
grant waivers or to take such other action as may be in the best interests of the United 
States particularly where modification of such practices would cause no danger to the 
public health and no increased risk of disease spread; 

BE IT RESOLVED, that the National Commission on Acquired Immune Deficiency 
Syndrome recommends and calls upon the Administration to immediately implement the 
following: 



55 



1. The Department of State, the Department of Justice and the Department of 
Health and Human Services should conduct a comprehensive review of immigration policies 
as they regard communicable disease, particularly HIV infection, focusing on public health 
needs. 

2. Nonimmigrants, such as conference participants, should not be questioned 
regarding their HIV status as a condition for entry into the United States or for issuance 
of a visa. Similarly, persons carrying medications or products associated with HTV infection 
or hemophilia should not be subject to detention or questioning. 

3. The following practices should also be implemented pending the comprehensive 
overall review of immigration policies recommended above: 

A. For applicants who otherwise qualify for legalization, asylum, or refugee 
status and who may be infected with HIV, standards for waivers should be liberally 
applied and they should be routinely granted particularly where family unity, 
humanitarian and or public interest grounds may exist. 

B. For applicants who otherwise qualify for permanent residency and who 
may be infected with HTV, similar waiver procedures should be adopted to the 
extent permitted by law. 

C. The Department of State, the Department of Health and Human Services 
and the Immigration and Naturalization Service should engage in cooperative efforts 
to institute policies and disseminate information targeted at notifying relevant alien 
groups of the availability of waivers and the circumstances under which they are 
granted. 

D. To the extent that HIV testing is part of any medical examination of 
applicants for permanent residency, refugee status or legalization, the Immigration 
and Naturalization Service and the Centers for Disease Control should carefully 
monitor training and compliance with their Instructions to Designated Physicians. 
Particular attention should be paid to pre and post-test counselling, confidentiality 
and appropriate referrals of persons for medical care and follow-up counselling. 

E. Confidentiality should be protected where HTV testing is part of the 
medical examination of applicants for visas, permanent residency, asylum, refugee 
status or legalization. Permanent marking in passports or on visas (including the 
use of codes which may become known) which in any way suggest that a person is 



56 



infected with HIV or any other designated communicable disease should be 
prohibited. Where medical examinations take place, steps should be taken to 
safeguard all medical information (including HIV status), particularly from staff 
recruited locally in foreign countries. 



57 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn, M.D. 

MEMBERS 

Diane Ahrens 
Scott Allen 



Press Release 
December 27, 1989 



Contact: Thomas Brandt 

202-254-5125 



COMMISSION HOLDS JANUARY SESSIONS 
IN ST. PAUL AND LOS ANGELES 



The National Commission on AIDS will hold a working group meeting 



Hon. Dick Cheney 
Harlon L. Dalton, Esq. 

Hon. Edward j. Dewinsh in St. Paul, Minnesota on January 4 and 5, then the entire Commission will 



Eunice Diaz, M.S., M.P.H. 

DonaldS. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, M.D. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



meet in Los Angeles on Jan. 24, 25 and 26 for formal hearings and site visits. 

The St. Paul working group will study the responsibilities of federal, 
state and local governments in responding to the human immunodeficiency 
virus (HIV) epidemic, and will report on their work to the full Commission. 

The Commissioners on the working group are Diane Ahrens, who is 
also a Ramsey County (St. Paul) Commissioner, Dr. Charles Konigsberg, who 
is Director of the Division of Health of the Kansas Department of Health 
and the Environment, and Larry Kessler, who is Executive Director of the 
AIDS Action Committee in Boston. 

The groups who will testify before the commissioners in St. Paul 
include the U.S. Conference of Mayors, the National Association of Counties 
and the National Conference of State Legislatures, among others. (A copy 
of the St. Paul agenda is attached). 

The Commission will also hear from officials from Dallas, Minneapolis, 
New York, North Carolina, Philadelphia, and San Francisco, as well as the 
Director of the National AIDS Program Office of the U.S. Department of 



58 



Health and Human Services. 

A copy of the agenda for the Los Angeles hearing will follow by 
separate mailing in January. 

The National Commission on AIDS is an independent body created 
by Congress to advise Congress and the President on development of "a 
national consensus on policy" concerning the HIV epidemic. 

The 15-member Commission includes five voting members appointed 
by the Senate, five appointed by the House, and two appointed by President 
Bush. The three non-voting members are the Secretary of Defense, the 
Secretary of Health and Human Services, and the Secretary of Veterans 
Affairs. 

(For your background please find enclosed a fact sheet on the 
Commission). 

# # # # 



59 



NATIONAL COMMISSION ON AIDS 
Working Group on Federal, State and Local Responsibilities 

AGENDA 

ST. PAUL, MINNESOTA 

JANUARY 4 - 5, 1990 

Thursday. January 4. 1990 

9:00 a.m. Opening Remarks 

County Commissioner Diane Ahrens, National Commission on AIDS 

9:15 a.m. Dr. James Allen, Department of Health and Human Services 

9:45 a.m. Ms. Ann Klinger, National Association of Counties 

10:05 a.m. Mayor Donald Fraser, U.S. Conference of Mayors 

10:25 a.m. BREAK 

10:40 a.m. Councilmember Brian Coyle, National League of Cities 



11:00 a.m. State Senator Linda Berglin, National Conference of State 
Legislatures 



11:20 a.m. LUNCH 

12:45 p.m. Councilmember Angel Ortiz, Philadelphia City Council 

1:15 p.m. Mr. James E. Smith, National Association of People with AIDS 

1:45 p.m. Mr. A. Billy S. Jones, National AIDS Network 



60 



2:15 p.m. Councilmember Lori Palmer, Dallas City Council 

2:45 p.m. Mr. Herb Stout, North Carolina County Commissioner 

3:15 p.m. Sister Mary Madonna Ashton, Minnesota Health Commissioner 

3:45 p.m. Mr. James Bulger, New York State AIDS Institute 

4:15 p.m. Mr. Tim Wolfred, San Francisco Mayor's Task Force 

4:45 p.m. ADJOURN 



Friday. January 5. 1990 

8:30 a.m. Working Group Meeting on Federal, State and Local Government Roles 

12:30 p.m. LUNCH 

1:30 p.m. Commission and Staff Wrap-Up 

1:45 p.m. ADJOURN 



61 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn, M.D. 

MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S.. M.P.H. 

Donald S. Goldman. Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg. M.D.. M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, M.D. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



Press Release 
January 12, 1990 



Contact: Thomas Brandt 
202-254-5125 



COMMISSION'S LOS ANGELES HEARINGS AND SITE VISITS 
TO FOCUS ON REGIONAL RESPONSE TO HIV EPIDEMIC 



The National Commission on AIDS will hold three days of hearings 
and site visits in Los Angeles January 24, 25 and 26 to study the special 
characteristics of the HTV (human immunodeficiency virus) epidemic in 
Southern California and the local response from the public and private 
sectors. 

Metropolitan Los Angeles has the second highest number of reported 
cases of AIDS in the country. The National Commission decided to hold 
hearings in Los Angeles because the epidemiology of the epidemic, the 
community response and the regional population differ from cities such as 
New York, which has the highest number of reported cases, or San Francisco, 
which is third. 

June Osborn, M.D., Chairman of the Commission, said, "The extensive 
experience in Los Angeles and Southern California epitomizes some of the 
variation of AIDS and HIV epidemic patterns in different regions of the 
country. It is very important to appreciate that such variety exists as we strive 
to develop comprehensive preventive and health care strategies." 



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62 



David Rogers, M.D., Vice Chairman of the Commission, said, "Because of the heavy 
burden of HIV in Los Angeles, and some of the innovative responses taken by local groups, 
the National Commission wants to know how some of these solutions might be applied in 
a national policy context." 

More than 30 witnesses will appear before the Commission during a full day of 
hearings on Thursday, Jan. 25 which will be held from 9 a.m. to 5:30 p.m. in the Oscar 
Room of the Hollywood Roosevelt Hotel, 7000 Hollywood Blvd., Hollywood. 

On Wednesday afternoon, Jan. 24 and all day Friday, Jan. 26 the Commission will 
visit various HTV and AIDS service organizations in the private and public sectors, including 
community-based organizations, hospitals and a hospice. 

Eunice Diaz, a member of the Commission from Los Angeles and Assistant Clinical 
Professor of Family Medicine at the University of Southern California School of Medicine, 
played a major role in planning the Commission's agenda for Los Angeles. 

A complete hearing agenda and schedule of the Commission's site visits is attached. 

Questions about the Commission in general and the Thursday hearings should be 
directed to Thomas Brandt at 202-254-5125. Journalists wishing to cover any of the site 
visits should contact the organization directly. Not all sites have provisions for full press 
coverage. Media contact names and telephone numbers for the site visits are listed on the 
attached schedule. 

The National Commission on AIDS is an independent body created by Congress to 
advise Congress and the President on development of "a consistent national policy" 
concerning the AIDS epidemic. 



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63 



The 15-member Commission includes five voting members appointed by the Senate, 
five appointed by the House, and two appointed by President Bush. The three non-voting 
members are the Secretary of Defense, the Secretary of Health and Human Services, and 
the Secretary of Veterans Affairs. 



# # # # 



64 



NATIONAL COMMISSION ON AIDS 

AGENDA 

LOS ANGELES, CALIFORNIA 

JANUARY 24 -26, 1990 

Wednesday. January 24. 1990 

2:00 p.m. Optional Site Visits - Departure from Hollywood Roosevelt Hotel 



Thursday. January 25. 1990 

9:00 a.m. OPENING REMARKS 

Chairman June E. Osborn, M.D. 

WELCOME 

The Honorable Tom Bradley, Mayor, City of Los Angeles 

Supervisor Edmund D. Edelman, County of Los Angeles 

The Honorable Rand Schrader, Chair, Los Angeles County AIDS Commission 

9:15 a.m. OVERVIEW OF SOUTHERN CALIFORNIA 

Area Demographics: Viviane Doche-Boulos, Ph.D., Southern California 
Association of Governments 

Epidemiology: Martin Finn, M.D., Los Angeles County Department Of 
Health Services 

Tom Prendergast, M.D., M.P.H., Orange County Health Care Agency 

9:45 a.m. SYSTEMS OF CARE 

Alex Taylor, M.P.H., San Bernadino County AIDS/STD Programs 
Dave Johnson, City of Los Angeles AIDS Coordinator 
Penny Weismuller, Dr.P.H., Orange County Health Care Agency 
Dale Fleishman, San Diego County Department of Health Services 

10:05 a.m. BREAK 



65 



10:15 a.m. ACCESS TO CARE 

Robert Gates, M.P.A, Los Angeles County Department of Health 

Wilbert Jordan, M.D., M.P.H., King/Drew Medical Center 

Bisher Akil, M.D., Kenneth Norris Hospital 

Mario Solis-Marich, Neighborhood AIDS Consortium 

Phill Wilson, Black Gay and Lesbian Leadership Forum 

J. Craig Fong, J.D., Asian Pacific Legal Center of So. California 

Donald Hagan, M.D., AIDS Services Foundation, Orange County 

Fred Wietersen, Being Alive 

Paul Rothman, D.O., Pacific Oaks Medical Group 

12:00 p.m. ALTERNATIVES TO INPATIENT CARE 

Michael Weinstein, AIDS Hospice Foundation 
Pam Anderson, AIDS Project Los Angeles 
Sharon Grigsby, M.B.A., Visiting Nurses Association 
Bessie Hughes, R.N., King/Drew Medical Center 

12:40 p.m. LUNCH 

1:40 p.m. COMMISSION BUSINESS 

2:40 p.m. SUBSTANCE ABUSE AND AIDS ISSUES 

Irma Strantz, Dr.PH., Los Angeles County Drug Abuse Program Office 

Connie Norman, AIDS Activist 

Henry Alonzo, El Centro Human Services Corporation 

William Edelman, L.C.S.W., A.C.S.W., Orange County Drug Abuse Services 

Xylina D. Bean, M.D., King/Drew Medical Center 

Danny Jenkins, Tarzana Treatment Center 

3:15 p.m. BREAK 

3:30 p.m. YOUTH. STREET YOUTH. PROSTITUTION AND HOMELESSNESS 

Gabe Kruks, Gay and Lesbian Community Service Center 

Ruth Slaughter, Project Warn 

Michael Cousineau, Dr.P.H., Los Angeles Homeless Health Care Project 

Jackie Goldberg, M.A.T., Los Angeles Board of Education 

4:10 p.m. ISSUES AFFECTING GAY AND BISEXUAL PEOPLE OF COLOR 

Juan Ledesma, AIDS Project Los Angeles 

Raul Magana, Ph.D., Orange County Health Care Agency 

Gil Gerald, Minority AIDS Project 

Dean Goishi, Asian/Pacific Lesbians and Gays 

Lydia Otero, Gays & Lesbians Latinos Unidos (GLLU) 

5:00 p.m. ADJOURN 



66 



NATIONAL COMMISSION ON AIDS 

SITE VISITS 

LOS ANGELES, CALIFORNIA 



Friday. January 26. 1990 



7:00 a.m. Board Bus at Hollywood Roosevelt Hotel 



7:30 a.m. Breakfast at Chris Brownlie AIDS Hospice 



9:00 a.m. Los Angeles County - University of Southern California Medical Center 



11:30 a.m. Lunch with Latino Community Leaders at Tamayo's Restaurant 



2:00 p.m. King/Drew Medical Center 



4:00 p.m. West Los Angeles Veterans Administration Medical Center 



6:30 p.m. Ecumenical/Interfaith Presentation at Santa Monica Hospital 



67 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn, M.D. 

MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S.. M.P.H. 

Donald S. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg. M.D.. M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, M.D. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



Press Release 
February 7, 1990 



Contact: Thomas Brandt 
Washington 202-254-5125 
Boston (Feb. 15 and 16 only, 
Westin Hotel) 617-262-9600 



COMMISSION REVIEWS ISSUES 
SURROUNDING HIV TESTING 



A working group of the National Commission on AIDS will meet in 
Boston February 15 and 16 to begin the Commission's study of early 
intervention and the psychosocial aspects of testing for HIV (human 
immunodeficiency virus). 

"HIV testing is one of the more sensitive and complicated issues of the 
AIDS epidemic," said Commissioner Scott Allen, who will chair the two-day 
meeting. 

The sessions will be held in the Westin Hotel Copley Place, 10 
Huntington Avenue, Boston. The Thursday session will run from 10 a.m. to 
5:15 p.m. and Friday's session will run from 9 a.m. to 4:30 p.m. 

The meeting format will include formal presentations followed by 
round table discussions, led by a professional facilitator, and including 
approximately 30 meeting participants. The participants will include 
government public health officials, health care professionals, representatives 
of community based organizations, academics, the Defense Department and 
the American Civil Liberties Union. 



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68 



A summary report from the meeting will be presented at the next full Commission 
meeting, to be held in Washington in March. 

A copy of the Boston meeting agenda and a list of participants is attached. 

Members of the National Commission Working Group on Social/Human Issues are: 
Harlon Dalton, who is Professor of Law at Yale; Eunice Diaz, who is an authority on AIDS 
among Hispanics and Assistant Professor of Family Medicine at the University of Southern 
California; Don Goldman, who is an attorney and former president of the National 
Hemophilia Foundation; and Larry Kessler, who is co-founder and Executive Director of 
the AIDS Action Committee in Boston. Other members of the Commission may attend. 

The Chairman of the Working Group, Scott Allen, is a Dallas minister who has done 
extensive work on the spiritual, ethical and psychological aspects of AIDS. 

The National Commission on AIDS is an independent body created by Congress to 
advise Congress and the President on development of "a consistent national policy 
concerning AIDS" and the HTV epidemic. 

The 15-member Commission includes five voting members appointed by the Senate, 
five appointed by the House, and two appointed by President Bush. The three non-voting 
members are the Secretary of Health and Human Services, the Secretary of Defense, and 
the Secretary of Veterans Affairs. 



# # # # 



69 



NATIONAL COMMISSION ON AIDS 

Working Group on Social/Human Issues 

AGENDA 

BOSTON, MASSACHUSETTS 

FEBRUARY 15-16, 1990 



Thursday. February 15. 1990 



10:00 a.m. Introductions Scott Allen, Chair 

Marc J. Roberts, Ph.D., Facilitator 



10:15 a.m. SESSION I: State of the Art in Trends and Issues 

* Presentations * 



Overview of Testing Issues - Paul Cleary, M.D. 

Types and Standards of Tests - John W. Ward, M.D. 

State Legislative Trends - Kate Cauley, Ph.D. 

The Challenge of Testing in Different Populations - Marie St. Cyr 



11:30 a.m. BREAK 



11:45 p.m. SESSION II: Programs of the Public Health Service 

* Presentations * 



The Centers for Disease Control 

Health Resources and Services Administration 



12:45 p.m. LUNCH 



1:45 p.m. SESSION IILThe Role of HIV Testing in Early Intervention 

* Roundtable Discussion * 
4:45 p.m. Wrap Up 

5:15 p.m. ADJOURN 

70 



Friday. February 16. 1990 



9:00 a.m. Introductions Scott Allen, Chair 

Marc J. Roberts, Ph.D., Facilitator 



9:15 a.m. SESSION IV:The Continuum of Psychosocial Needs 

* Presentation * 
Dr. Marshall Forstein 

* Roundtable Discussion * 

12:15 p.m. LUNCH 

1:15 p.m. SESSION V: Summary 

* Roundtable Discussion * 

2:15 p.m. BREAK 

2:30 p.m. Working Group Business 

4:30 p.m. ADJOURN 



71 



Commission Working Group 
Scott Allen 

Harlon L. Dalton, Esq. 
Eunice Diaz, M.S., M.P.H 

Meeting Facilitator 
Marc J. Roberts, Ph.D. 

Participants 
Rona N. Affoumado 
Hortensia Amaro, Ph.D. 
Walter F. Batchelor 

Kate Cauley, Ph.D. 

Paul Cleary, M.D. 

Deborah Cotton, M.D., M.P.H.- 

Mindy Domb 

Eric L. Engstrom 

William F. Flanagan 

Marshall Forstein, M.D. 

Jackie Gelfand, MA., M.F.C.C.- 

Alan Hinman, M.D., M.P.H. - 

Wayne Johnson, Jr., M.S.P.H. - 

Jeff Levi 

Harvey Makadon, M.D. 

John F. Mazzuchi, Ph.D. 

Jim McEvoy 

Alvin Novick, M.D. 

Joseph O'Neill, M.D., M.P.H. - 

Alonza Plough, Ph.D. 

Marie St. Cyr 

Ronald St. John, M.D., M.P.H.- 



NATIONAL COMMISSION ON AIDS 

Working Group on Social/Human Issues 

February 15 & 16, 1990 
Boston, Massachusetts 

Donald S. Goldman, Esq. 
Larry Kessler 



Professor of Political Economy and Health Policy, Harvard School of Public Health 

Executive Director, Community Health Project, New York 

Assistant Professor, School of Public Health, Boston University 

Director of Research, John Snow, Inc., Research and Training Institute; Member, American 
Psychological Association 

Deputy Director for the AIDS Policy Project, Intergovernmental Health Policy Project 

Associate Professor of Medical Sociology, Harvard School of Public Health 

Clinical Director for AIDS, Beth Israel Hospital, Boston, MA 

AIDS/HIV Educator, Pittsfield, MA 

Executive Director, National AIDS Network, Washington, DC 

Director of Public Policy, AmFAR, New York 

Outpatient Psychiatry, Cambridge Hospital 

ATS Project Manager, Los Angeles Gay & Lesbian Community Services Center 

Director of Centers for Prevention Services, Centers for Disease Control 

School of Public Health, University of South Carolina, Columbia 

Consultant, Washington, DC 

Executive Director, Boston AIDS Consortium; Asst. Professor, Harvard Medical School 

Office of Assistant Secretary for Health Affairs, Department of Defense, Washington, DC 

Representative from the National Association of People With AIDS 

Professor of Biology, Yale University; Mayor's Task Force on AIDS, New Haven, CT 

Chief Medical Director, Division of HIV Services, Health Resources and Services Administration 

Deputy Commissioner for Public Health, City of Boston 

Executive Director, Women and AIDS Resource Network, Brooklyn 

National AIDS Program Office, Department of Health and Human Services 



72 



Romeo Sanchez - Human Rights Specialist, New York City Commission on Human Rights 

H. Denman Scott, M.D. - Director of Health, Rhode Island Department of Health; President, Association of State 

& Territorial Health Officials 

Peter Smith, M.D. - Department of Pediatrics, Rhode Island Hospital, Providence 

Jill Strawn, R.N., M.S.N. - Director of Agency Outreach, Community Health Education Project, New Haven, CT 

John W. Ward, M.D. - Special Assistant for Science (HIV), Centers for Disease Control, Atlanta 

Bob White - Deputy Director, BEBASHI (Blacks Educating Blacks About Sexual Health Issues), Philadelphia 

Wayne S. Wright - Executive Director, Multicultural AIDS Coalition, Boston 



73 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E Oshorn. M.D. 

MEMBERS 

Diane Ahrens 
Scon Allen 



Press Release 
February 20, 1990 



Contact: Thomas Brandt 
202-254-5125 



COMMISSION VISIT FOCUSES ON HIV AMONG NEW YORK HOMELESS 
AND NEW JERSEY DRUG USERS. HEMOPHILIACS AND CHILDREN 



Hon. Dick Cheney 
Harlon L. Dal ion. Esq. 

Hon. Edward j. Deminski for the homeless in New York City including the Bowery Resident's 

Committee, Bellevue Men's Shelter, Fort Washington Armory Shelter, 

Donald 5. Goldman, Esq. 

Don c. Desjariais. ph. d Hetrick-Martin Institute, and the Minority Task Force on AIDS to learn more 



On February 26 the National Commission on AIDS will visit facilities 



Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, M.D. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



about the prevalence of HIV infection among the homeless and their access 
to health care. 

On February 27 the Commission will go to New Jersey for briefings 
by state health officials followed by tours of two hospitals, a drug treatment 
center, and a regional hemophilia treatment center. 

Many experts believe that 30 percent or more of New York City's 
homeless are already infected with HIV, which is the virus that causes AIDS. 
In several New York shelters the HIV incidence is thought to be 60 percent 
or more. Government officials say there are more than 30,000 homeless 
persons in New York City, though advocates for the homeless say there may 
be two to three times that number. 

The Commission will also tour Children's Hospital in Newark and the 
Regional Hemophilia Treatment Center at St. Michael's Hospital in Newark. 

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74 



"The tragedies of homelessness, of drug addiction, and of HIV disease are each 
devastating," said June E. Osborn, M.D., Chairman of the National Commission. 

"When they are combined the affect is debilitating to society itself and underscores 
our need to deal aggressively with fundamental inequities in access to health care which 
have been enhanced by the pressures of the AIDS epidemic," Dr. Osborn added. 

David E. Rogers, M.D., who is Vice Chairman of the National Commission and also 
chairman of the AIDS advisory panels to the state of New York and to New York City, 
said, "New York City remains the epicenter of AIDS. Nowhere are the heartrending 
problems created by this dreadful disease more evident. 

"Many places the Commission is visiting, where they do daily battle against poverty, 
drug abuse and homelessness, were on mere subsistence budgets even before the HIV 
epidemic. Now they must try to survive while facing the enormous new burdens of HIV. 
The Commission wishes to witness this struggle first hand as it develops recommendations 
for Presidential and Congressional action," Dr. Rogers added. 

The National Commission on AIDS is an independent body created by Congress to 
advise Congress and the President on development of a "consistent national policy" 
concerning the AIDS epidemic. 

The 15-member Commission includes five voting members appointed by the Senate, 
five appointed by the House, and two appointed by President Bush. The three non-voting 
members are the Secretary of Health and Human Services, the Secretary of Defense, and 
the Secretary of Veterans Affairs. 

# # # # 



75 



NATIONAL COMMISSION ON AIDS 

SITE VISITS 

NEW YORK CITY 

FEBRUARY 26, 1990 



7:30 a.m. Presentations 



Ernest Drucker, Ph. D., Albert Einstein College of Medicine 
Topic: Epidemiology of homelessness and AIDS 

Kim Hopper, Ph. D., New School 

Topic: Sociological impact of the AIDS epidemic and homelessness 



8:45 a.m. Bellevue Men's Shelter - 400 East 30th Street 

Presentation 

Gail Gordon, Executive Director, Adult Services Agency, Human Resources 
Administration, City of New York 

Tour of facilities 

9:45 a.m. Bowery Resident's Committee - 191 Chrystie Street 

Tour of subway station, public housing for single individuals and other 
facilities 

11:30 a.m. Hetrick-Martin Institute - 24 Horatio Street 

Meeting with service providers and runaway youth 

Hetrick-Martin, First Step Project 

Street Work, A Project of Victims Services 

Street Beat, Planned Parenthood South Bronx Project 

1:00 p.m. LUNCH 

Citizens Commission on AIDS - 121 Avenue of the Americas 



76 



3:00 p.m. Minority Task Force on AIDS - 92 Saint Nicholas Avenue 

Presentation 

Homeless women living with HIV 

Meeting with Minority Community Based Organizations 

Minority Task Force on AIDS 
Hispanic AIDS Forum 

4:30 p.m. Fort Washington Armory Shelter - 219 Fort Washington Avenue 
Tour of facilities 



77 



NATIONAL COMMISSION ON AIDS 

SITE VISITS 

NEW JERSEY 

FEBRUARY 27, 1990 

8:30 a.m. Jersey City Medical Center - 50 Baldwin Avenue, Jersey City 

Welcoming Remarks 

Jonathan Metsch, Ph. D., Chief Executive Officer, Jersey City Medical Center 

Presentations 

Robert Hummel, Assistant Commissioner, Division of AIDS Prevention and 
Control, New Jersey Department of Health. 
Topic: Overview of AIDS/HIV in New Jersey 

Christine M. Grant, Deputy Commissioner of Health, New Jersey Health 
Department 
Topic: Health Care Delivery System and Reimbursement in New Jersey 

Jonathan Metsch, Ph.D. Chief Executive Officer, Jersey City Medical Center 
Topic: The Jersey City Experience 

Case conference/Program issues 

Other providers attending 

Christ Hospital 

Jersey City AIDS Task Force 

Hudson County AIDS Consortia 

FAITH Services 

Hyacinth Foundation 

Health Care for the Homeless 

11:00 a.m. Spectrum Health Care - 461 Frelinghuysen Avenue, Newark 

Welcoming Remarks 

Richard Russo, Assistant Commissioner of Health, Division of Narcotics and 
Drug Abuse Control, New Jersey Health Department 



78 



Presentation 

Edward Cox, Executive Director, Spectrum Health Care 
John Cox, Director, AIDS Programs 

Joyce Jackson, Chief, Division of Alcoholism and Drug Abuse Control, N.J. 
Department of Health 

Dialogue 

James Cowan, MD. Spectrum Health Care 

Fr. Norman O'Connor, Straight and Narrow, Inc. 

Anita Vaughn, MD., Newark Community Health Center 

Christine Grant, New Jersey Department of Health 



1:00 LUNCH 

Children's Hospital, Newark, New Jersey 

2:00 p.m. Children's Hospital - South 9th Street, Newark 

Roundtable discussion 

The Commission members will be divided into four groups. The groups will 
discuss the following issues: 

Women and AIDS 

AIDS and Public Policy 

Community Based Organizations in the AIDS Epidemic 

New Jersey Service Delivery System for Families with AIDS 

Tour of facilities 



3:15 p.m. St. Michael's Hospital - 268 Martin Luther King. Blvd., Newark 
Comprehensive Hemophilia Care Center 

Tour of facilities 



79 



Presentations 

Franklin Desposito, M.D. & Yale Arkel, M.D., Directors 
Parvin Saidi, M.D., Director, Comprehensive Hemophilia Treatment Center, 
Robert Wood Johnson University Hospital 

Meeting with patients and families 



4:15 p.m. CLOSING REMARKS 



Leah Zisken, M.D., Acting Health Commissioner, New Jersey Health 
Department 



80 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn. M.D. 



MEMBERS 

Diane Ahrens 

Scon Allen 

Hon. Dick Cheney 

Harlon L. Dalton. Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S.. M.P.H. 

Donald S. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, MD. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



TESTIMONY 
before the 

TASK FORCE ON HUMAN RESOURCES 



COMMITTEE OF THE BUDGET 
U.S. HOUSE OF REPRESENTATIVES 



March 6, 1990 



by 

JUNE E. OSBORN, M.D. 
Chairman 



81 



Good afternoon, Congresswoman Boxer and members of the Committee. I am Dr. 
June Osborn, Dean of the School of Public Health at the University of Michigan and 
Chairman of the National Commission on AIDS. I want to tell you about some experiences 
the Commissioners have had recently that intensify our sense of urgency about meeting 
health care needs of people living with HIV and AIDS. All these impressions lead to the 
same conclusion: that over the past decade the U.S. has suffered the accelerating 
emergence of a human disaster that is unequally distributed across the country, that dwarfs 
in scale the physical disasters of recent times, and that begs for an urgent federal response 
such as that embodied in "Impact Aid". 

Since the beginning of January, the Commission has visited some of the areas most 
severely affected by the first decade of AIDS, including southern California, New York and 
New Jersey. Furthermore, as chairman, I joined Mayor Agnos of San Francisco in January 
to help make public the product of a year's work by his AIDS Task Force ~ an event I will 
mention at the close of my remarks. 

Let me share with you some impressions of the New York-New Jersey visit of last 
week, since they are indelibly etched in my mind. [Parenthetically, a number of the 
Commissioners have told me that they, too, have found it impossible to shake the effects 
of what we saw when we visited there, and have barely been able to sleep since our visits 
with the homeless of New York.] 

The anguish we witnessed - the destitution, the unthinkable daily jeopardy of 
persons who lack homes and food and health care, whose families have been decimated by 
poverty and chemical dependency, and whose lives are now under threat from HIV and 
AIDS - all those abstract components of tragedy took human shape in the narratives of 
personal experience, and were made all the more real to us by the poignant pleas for 
understanding by the homeless people we talked with. The brave advocates and outreach 
workers who facilitated our meetings left me in awe of the courage they display just in 
returning, day after day, to a battle where they have no ammunition and, indeed, no 
battlefield on which to stand. 

Images of our visit to the Fort Washington shelter are burned as indelibly on my 
retinae as if I had stared into the cruel winter sun. Nine hundred thirty-three men sleep 
there nightly (a slightly different group each night, depending on who is lucky enough to 
line up in time for a cot). The very great likelihood is that a majority of those huddled 
there — when we visited on the coldest night of the year — were infected with the human 
immunodeficiency virus. As a physician, I found that almost beyond contemplation! That 
should definitely be against medical advice!! 

But even in that unthinkable place, humanity shone through from what seemed the 
least likely of directions. A couple of destitute homeless men, showing their positive 
tuberculin skin tests to the Commissioners, voiced their concern that - and I quote - 
"people who are extra-susceptible to infections should never be sleeping in a place like this!" 



82 



Fort Washington was not the only horror. During our travels we heard about 
families not only broken but kept asunder by rigid visitation rules for addicted mothers - 
- even those under treatment. We heard from people who had at least staked out a specific 
shelter site, who were suddenly being shuttled from one remote cot to another, coincident 
with authorities learning of their HIV-positive status. Outreach workers told us of the 
extraordinarily brisk response of addicts to take up the hope offered by new drug treatment 
slots - and of the anxiety of the conscientious health professionals at drug treatment clinics 
about how they would cope when the one-year-only funding wore out and freshly recruited 
addicts in treatment could no longer be accommodated. We heard tales of health care 
denied unless it required acute hospitalization, and we heard desperate pleas in New Jersey 
that something be done to ensure that all hospitals participate equally in provision of under- 
reimbursed AIDS care, rather than continue the grossly disproportionate distribution 
resulting from the subtle "patient dumping" now practiced. 

All this would have been troubling enough; but one could not escape the nagging 
awareness that if we are so far behind now, what will we do as the case numbers double 
within the next two years? and how can we be urging that people come forward for HIV 
testing using the lure of early interventive evaluation and treatment, when health systems 
are collapsing with one-tenth their number and when discrimination seems a far more likely 
result than compassionate care? The mere word "disaster" is not strong enough to describe 
what we have seen, for in a very real sense, the "human" has been leached from "human 
services" in a way that should shame us all! 

I am a member, also, of the Global Commission on AIDS of the World Health 
Organization, and in November we met in central Africa, undertaking similar visits in an 
effort to appreciate the impact of the HIV epidemic there. I came back much shaken, for 
in Kinshasa I had seen hospitals where the beds were lined up 30 in a row with only enough 
space between them for family to stand and tend to their loved ones themselves since there 
were no nurses; and half those beds were filled with people with AIDS. There was no 
pharmacy, no food service, no laundry; and the doctors had not been paid for several 
weeks ~ but at least there were families, and they were doing their best. I thought, after 
that, that I had seen it all, but after last week I realized that even central Africa paled in 
comparison to some of what is happening in the shadow of the Statue of Liberty! We are 
seeing drugs and poverty and hopelessness — and now HIV and AIDS — threaten to 
complete the investiture of an "underclass" in our once-proudly classless land of opportunity. 

By inattention we have let our cities slide into a silent social disaster. There are 
more homeless in New York in 1990 than there were at the depths of the Great 
Depression, and now their ranks are being swollen further by AIDS. The despairing people 
in New York, in Jersey City and Los Angeles, in Newark and San Diego must find it harsh 
and bitter to hear about the wonderful biomedical research progress against HIV, about 
increasingly effective treatment for AIDS, and about the promise of early intervention - 
when they cannot even get access to primary care! Even the emergency rooms on which 
they depend in times of crisis are closing their doors, as public hospitals teeter on the brink 
of collapse. It is indeed a disaster! There were no carefully engineered steel rods in the 
health care edifice that was so casually erected over the past several decades, and the 
crumbling has begun in earnest! 



83 



It is often said these days that AIDS is "just one disease" -- that we have focussed 
enough resources on it and should now move on to other diseases and issues. I could not 
disagree more strongly! In a very important sense, AIDS is a metaphor ~ the only really 
new things about the HIV epidemic are the virus itself and the pressure of burgeoning 
numbers of young adults needing sustained care. All the rest of the problems we face are 
old ones that we have ignored or patched or minimized beyond all common sense. 

There is a ghastly public complacency in this country right now about the AIDS 
epidemic, stemming (I fear) from the sense that it is happening to "others." Soon we will 
get over that, for we will all know someone caught in the sad web of blighted lives and 
premature death. We might have the help of that universal awareness even now, were not 
so many people grieving in secret for fear of discrimination or perceived disgrace. We have 
had over 120,000 cumulative cases of AIDS in America, and over 70,000 have died. Those 
awful numbers will double and double again during this decade, even if we could stop 
further virus spread tomorrow! We must recognize this for the disaster it is and respond 
humanely. And we must, at the same time that we take urgent action, proceed to make 
amends for the heartless omissions of past decades and plan carefully for the compassionate 
care of all our citizens. If we do so thoughtfully, our efforts will have benefits far beyond 
the range of the HIV epidemic. 

I mentioned at the beginning that I had been to San Francisco in January, and it was 
a gleam of light in this dark time. There is no question there about whether AIDS is a 
disaster. And the Task Force report I helped to "launch" gave inspiring testimony to what 
a community can do when it pulls together to face the problems squarely, uniting business 
and health care and religion and minority and community activist groups with government 
in a common and coordinated response. There is no doubt that the San Francisco plan will 
be demanding - in fact, I strongly suspect that emergency federal relief through Impact Aid 
may constitute the marginal difference between success and failure. But the example of a 
united front against this awful disease reminds me again of the power of family - of just 
how powerful we can be in the face of disaster when we remember that we are all one 
human family! 



Note: The text of a full address delivered on December 1, 1990 to the Harvard AIDS 
Institute by Dr. Osborn at their World AIDS Day observance was introduced by 
Congressman Louis Stokes into the Congressional Record of January 31, 1990 (see pages 
E141-144). 



84 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn, M.D. 

MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S., M.PB. 

Donald S. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, M.D. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



FOR IMMEDIATE RELEASE 

March 6, 1990 



Contact: Thomas Brandt 
(202) 254-5125 



STATEMENT ON THE "CARE" ACT OF 1990 

The National Commission on AIDS endorses the principles and 
objectives of the Comprehensive AIDS Resources Emergency (CARE) Act 
of 1990. This legislation is responsive to many of the recommendations in the 
report issued by the National Commission on AIDS in December, 1989, as 
well as to recommendations of the Presidential Commission Report on 
the HIV Epidemic of June, 1988. 

There must be frank recognition that a health care crisis exists in many 
of our cities that will require extraordinary measures to overcome. The HTV 
epidemic of the 1990's will be far worse than what we have seen thus far. 
Our nation simply must be prepared to invest adequate resources now or pay 
dearly later. 

The CARE Act of 1990 will provide emergency funds to those areas 
hardest hit by the epidemic. It will provide critical support for services in 
hospitals, clinics, other health facilities, and in the home. The CARE Act will 
prompt the development of more effective systems for the delivery of health 
and support services, including early intervention. It will develop and fund 
mechanisms to assure continuity of health insurance coverage for people with 
HTV disease and will also create community-based consortia capable of 
delivering a comprehensive continuum of care. 

The Commission's recent hearings and site visits in the Los Angeles, 
New York City, and northern New Jersey areas impressed upon us the serious 
need for increased coordination between the various levels of government. 
Managing the HIV epidemic is a responsibility that must be shared by all. 
This legislation would stimulate further planning and coordination between 
all levels of government and the private sector. 

The health care system in this country is not working well and nowhere 
is that more evident than for people with HTV infection and AIDS. While 
AIDS is not the cause of the health care system's disarray, it's epidemic 
nature has accelerated the urgent need for responsible national action to 
correct the system's serious shortfalls. 

The Commission is extremely pleased that a strong bipartisan 
commitment has been made to enact this bill and looks forward to the 
passage and funding of comprehensive AIDS care legislation by the 101st 
Congress. 



85 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn, M.D. 



March 9, 1990 



MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S., M.P.H. 

Donald S. Goldman, Esq. 

Don C. DesJarlais. Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland. M.D. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



President George Bush 
The White House 
Washington, D.C. 20500 

Dear President Bush: 

We are writing to summarize some of the recent events concerning 
international travel restrictions and HIV infection, in hope that you may be 
able to accelerate a resolution of problems of intense concern to scientists 
and to travelers. 

As you may know, the constraint on visa applicants and international 
travelers arose through a Congressional amendment to the Supplemental 
Appropriations Act of 1987, which directed the President to add HIV 
infection to the list of "dangerous contagious diseases" that included a number 
of other infections. Many experts in the U.S. Public Health Service and in 
the scientific and infectious disease communities felt that the list, as then 
constituted, was out of date and failed to take into account recent advances 
in our understanding of the limited transmissibility of most of the diseases 
listed. We are delighted by the recent thorough review conducted by the 
Public Health Service which concluded that, in this day and age, only active 
tuberculosis should be on such a list, and that there was no modern 
justification for continuing to list the others, including HIV infection. 

Legislation is currently being introduced to assert that the authority for 
such a conclusion properly lies with the Public Health Service; however, that 
will clearly take some time to make its way through Congress. In the 
meanwhile, as you know, there is increasingly intense international unrest 
about the present travel policies which are considered to be onerous and 
discriminatory, even as amended. The important scientific and service 
contributions of the Sixth International Conference on AIDS and the XIX 
International Congress of the World Federation of Hemophilia are in 
jeopardy. The sentiment of the international community is clearly articulated 
in a motion passed by the European Parliament calling for the relocation of 
the Sixth International Conference on AIDS - currently scheduled for San 
Francisco, June 20-24, 1990 -- "to a country that does not practice 
discrimination." 



86 



Page two ~ President Bush 



We respectively suggest, since all the background work has been conducted diligently 
by the health component of the Executive Branch and since the remaining difficulties relate 
to domestic issues of clarification of jurisdiction, that you could make a major contribution 
to early resolution of this sensitive problem by calling for a blanket waiver of HIV infection 
restrictions in all visa considerations. 

Many international groups have deferred definitive boycott as long as possible, but 
we fear that deadlines are fast approaching. Therefore, we respectfully suggest that time 
is of the essence. We would be glad to provide further documentation, and of course we 
would be pleased to discuss these matters with you if you so desired. 



Sincerely, 

David E. Rogers, M.D. June E. Osborn, M.D. 

Vice Chairman Chairman 



87 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn, M.D. 

MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz. M.S., MJ>.H. 

Donald S. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, M.D. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



Press Release 
March 9, 1990 



Contact: Thomas Brandt 
202-254-5125 



COMMISSION REVIEWS THE 'DRUG WAR' AND THE 
PEPPER COMMISSION REPORT FOR HIV IMPACT 



The National Commission on AIDS will hold hearings March 15 and 
16 to review the HIV elements of the National Drug Control Strategy and to 
examine the issues in the Pepper Commission report concerning care for 
those with HIV disease. 

Dr. Herbert D. Kleber, a deputy director of the White House Office 
of National Drug Control Strategy, will discuss the President's drug control 
plan with the Commission, while the Pepper Commission will be represented 
by a member, U.S. Representative Henry Waxman, and Judith Feder, the 
executive director. 

June E. Osborn, M.D., Chairman of the National Commission on 
AIDS, said, "Experience has been a harsh teacher regarding the intimate 
connection between drug use and the HIV/ AIDS epidemic. In New York and 
New Jersey, Edinburgh and most recently in Thailand, we have seen awesome 
demonstrations of the flashfire potential for HIV spread associated with illicit 
drug use. The Commission is concerned that present Administration plans for 
drug control strategy appear to minimize the critical issue of availability of 
drug treatment for addicted persons who see the dangers and want out." 

-more- 



88 



On March 3 the Pepper Commission released recommendations on providing health 
care coverage to 31 million uninsured Americans and long term care to the disabled. 

David E. Rogers, M.D., Vice Chairman of the National Commission on AIDS, said, 
"A rapidly growing problem of the HIV epidemic is the lack of funds to care for those who 
are ill or dying with AIDS, and the problem is intensified as the epidemic grows worse 
among the poor and homeless who often have no health insurance, and little contact with 
providers of medical care. It is our hope that many of the solutions suggested by the 
Pepper Commission will be helpful in dealing with the AIDS crisis." 

At the two-day hearing there will also be discussions of issues currently under review 
by working groups of the AIDS Commission dealing with intergovernmental responsibilities 
and social and human issues, along with other Commission business. 

The sessions will be held in meeting room B of the Pan American Health 
Organization Building, 525 23rd St., NW, Washington, D.C. (Foggy Bottom is the closest 
Metro stop). An agenda for the two day meeting is attached. 

The National Commission on AIDS is an independent body created by Congress to 
advise Congress and the President on development of a "consistent national policy" 
concerning the HIV epidemic. 

The 15-member Commission includes five voting members appointed by the Senate, 
five appointed by the House, and two appointed by President Bush. The three non-voting 
members are the Secretary of Health and Human Services, the Secretary of Defense, and 
the Secretary of Veterans Affairs. 

# # # # 



89 



NATIONAL COMMISSION ON AIDS 

AGENDA 

MARCH 15-16, 1990 

Pan American Health Organization 

525 23rd Street, N.W. 

Meeting Room B 

Washington, D.C. 



Thursday. March 15. 1990 



8:30 a.m. REPORT OF THE PEPPER COMMISSION 

U.S. Bipartisan Commission on Comprehensive Health 
Care Recommendations To The Congress 

Honorable Henry A. Waxman 
U.S. Representative 

Judith Feder 

Executive Director, The Pepper Commission 



9:00 a.m. DRUG USE AND THE HIV EPIDEMIC 

Herbert D. Kleber, M.D. 

Deputy Director for Demand Reduction 

Office of National Drug Control Policy 

Representative 

Alcohol, Drug Abuse, and Mental Health Administration 

Representative 

National Institute on Drug Abuse 

Don C. Des Jarlais, Ph.D. 
National Commission on AIDS 



12:00 p.m. LUNCH 

1:00 p.m. PEPPER COMMISSION REPORT - Further Discussion 

2:00 p.m. HOUSING AND THE HIV EPIDEMIC 



90 



3:00 p.m. BREAK 

3:15 p.m. COMMISSION BUSINESS 

WORKING GROUP REPORTS 



1. Social/Human Issues 

2. Federal, State, and Local Responsibilities 



4:30 p.m. ADJOURN 



Friday. March 16. 1990 

9:00 a.m. COMMISSION BUSINESS 
Chairman's Overview 

9:30 a.m. Commission Initiatives and Legislative Update 

10:15 a.m. BREAK 

11:30 a.m. General Discussion 

12:30 p.m. LUNCH 

1:30 p.m. General Discussion 

3:00 p.m. ADJOURN 



91 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street. N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn. M.D. 

MEMBERS 

Diane Ahrens 

Scon Allen 

Hon. Dick Cheney 

Ha r I on L. Da I ron, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S.. M.P.H. 

Donald S. Goldman, Esq. 

Don C. DesJarlais. Ph. D 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, M.D. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



FOR IMMEDIATE RELEASE 
March 15, 1990 



Contact: Thomas Brandt 
202/254-5125 



STATEMENT BY NATIONAL COMMISSION ON AIDS 
THAT EPIDEMIC MAY HAVE PEAKED IN 1988 



There is an ongoing debate among epidemiologists as to whether or 
when the HIV epidemic may "peak." We do not wish to enter that debate. 
What we wish to emphasize is the universal agreement on an absolutely key 
point: that the load of new cases of AIDS and the human suffering in the 
1990s will far surpass the 1980s. It is estimated that there are roughly one 
million people in the United States who are infected with HIV. To date 
only a little more than 10 percent of them have developed full blown AIDS, 
but there is every indication that many more will do so. Indeed, in many 
parts of the country the AIDS epidemic is only getting started. 

The National Commission on AIDS feels we simply must move much 
more aggressively than we did in the 1980s to provide care and treatment for 
those who will inevitably become sick, to continue an intensive effort to find 
a cure, a vaccine, and to promote preventive education to stop the spread of 
infection to new individuals. Clearly we will continue to have morally and 
economically unacceptable numbers of people falling ill with AIDS during the 
decade to come. 



92 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 f FAX] 254-3060 



CHAIRMAN 

June E. Osborn, M.D. 



MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz. M.S.. M.P.H. 

DonaldS. Goldman, Esq. 

Don C. DesJarlais. Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, M.D. 

Hon. Louis W. Sullivan, M.D. 



WORKING GROUP SUMMARY REPORT 



on 



Federal, State, and Local Responsibilities 



January 4-5, 1990 
St. Paul, Minnesota 



EXECUTIVE DIRECTOR 

Maureen Byrnes 



March 15, 1990 



93 



INTRODUCTION 



The lack of clear definition of government roles and intergovernmental partnerships 
in responding to the Human Immunodeficiency Virus (HTV) epidemic has seriously 
hampered efforts to end discrimination, to finance health care, to organize and deliver 
health and social services, to recruit and train health care workers, to provide housing for 
the sick, to provide effective AIDS education and prevention programs, and to provide 
substance abuse treatment and prevention programs. This is one of the major findings of 
the Working Group of the National Commission on AIDS looking at the roles and 
responsibilities of different levels of government in responding to the HIV epidemic. Given 
the testimony received from representatives of all levels of government, the Working Group 
strongly recommends that the federal government adopt a greater leadership role in helping 
to delineate government responsibilities and to create effective partnerships between the 
various levels of government as well as with the private sector. 

The Working Group was told "The responsibility for addressing AIDS-related issues 
and services and care that are provided for us [persons with HIV] is, for the most part, 
haphazard, inconsistent, isolated and not integrated." We were also told "Governments 
must assume leadership in this crisis" and "Leaders often must take unpopular stances and 
try that which has not been tried." And, we were reminded that Thomas Jefferson once said, 
"The care of human life and happiness is the first and only legitimate object of good 
government." 

With this report to the Full Commission, we hope to highlight the different roles of 
government, the problems confronting all levels of government in responding to the HIV 
epidemic, and recommendations for how we might better respond to the epidemic and 
forge the partnerships so desperately needed in this country. 

This report by no means contains all the answers or even covers all the issues. What 
it does is take the first step toward answering the question "Who is responsible for action?" 
Although we do not have all the answers, we are confident that the most effective response 
to the HIV epidemic will be one that reflects a partnership between all levels of 
government and the private sector; and the driving force, the leadership needed to establish 
these partnerships, we believe, should come from the federal government. 



94 



BACKGROUND 



The National Commission on AIDS held a working group meeting on federal, state, and 
local responsibilities in St. Paul, Minnesota on January 4-5, 1990. 

The first day of the meeting was devoted to formal testimony. At the morning session, oral 
and written testimony was presented by representatives from the U.S. Department of Health 
and Human Services; the National Governors' Association; the National Conference of 
State Legislatures; the National Association of Counties; the National League of Cities; and 
the U.S. Conference of Mayors. 

At the afternoon session, elected and appointed officials of municipal, county, and state 
government presented testimony, as well as representatives of national AIDS service 
organizations. Public officials represented Philadelphia; Dallas; San Francisco; Wake 
County (Raleigh), North Carolina; New York State; and the State of Minnesota. Testimony 
was heard from representatives of the National Association of People with AIDS and the 
National AIDS Network. 

The second day of the meeting was a roundtable discussion of policy, program and service 
areas for government related to the HIV epidemic, and specific roles and responsibilities 
of federal, state, and local governments. Participants in the roundtable discussion included 
federal, state, and local officials, as well as national AIDS service organization 
representatives, who had testified earlier, three members of the National Commission on 
AIDS, staff to the Commission, and a group facilitator. A copy of the agenda and the 
presenters for the two-day meeting is attached to this summary report. 

Diane Ahrens, a member of the National Commission on AIDS and also Commissioner of 
Ramsey County (St. Paul), Minnesota, chaired the two-day meeting. Commissioner Ahrens 
is Chair of the National Association of Counties' Task Force on HIV Infection and AIDS. 
Other members of the National Commission on AIDS participating in the working meeting 
included Larry Kessler, Executive Director of the AIDS Action Committee in Boston and 
Dr. Charles Konigsberg, Director of the Kansas Division on Health, Kansas Department 
of Health and Environment. 



95 



OVERVIEW 



Three goals were set for the working group meeting: 

1. to establish policy, program, and service areas related to the HTV epidemic 
for different levels of government (federal, state, county, and municipal) to 
answer the question, "Who is doing what?" 

2. to delineate major problem areas related to government roles and 
responsibilities in responding to the HIV epidemic to answer the question, 
"What isn't working?" 

3. to hear the views of municipal, county, state, and federal officials, as well as 
the views of a national AIDS service organization, about appropriate roles and 
responsibilities for different levels of government in specific areas to answer 
the question, "What would work better?" 

The two major themes to emerge from the testimony and discussion about government roles 
and responsibilities in responding to the HIV epidemic were leadership and partnership. 

Leadership at all levels of government was defined as "taking hold of an issue, providing 
an idea of the extent of a problem and the ramifications of action and inaction, inspiring 
people and calling forth the best from them to deal with the problem, mobilizing their 
compassion and talents." 

Local 

Examples of leadership at the community level included: city council members' involvement 
in Philadelphia in calling for the first public hearings on the impact of the HTV epidemic 
on the city's residents; a city sponsored AIDS awareness program in Dallas; and in 
Minneapolis "putting early money" into the first AIDS education efforts of the Minnesota 
AIDS Project. The U.S. Conference of Mayors, which has monitored activities of 
communities since 1984 in planning and coordinating local responses to AIDS and 
developing AIDS policies, pointed to San Francisco's Mayor's HIV Task Force, Seattle- 
King County's five-year HTV plan, and Austin-Travis County (Texas) HIV Commission as 
examples of leadership and partnership involving cities, counties, and private sector groups. 

The U.S. Conference of Mayors described a leadership role for cities in the following areas: 
(1) assessing the incidence of HTV infection and affected populations and the need for 
prevention, treatment, and support services; (2) planning, program development, 
and coordination; (3) establishing policies; (4) assuring or providing services within the 
resource capabilities of cities (e.g., early intervention services, health care and supportive 
services, substance abuse services); (5) providing and encouraging education and prevention 
services (e.g., city employees, elementary and secondary schools, local employers); (6) 
financing services; (7) passing anti-discrimination ordinances in employment, housing, and 
public accommodations; (8) advocacy for state and federal resources to address the 
disproportionate need in cities; and (9) advocacy for support and funding for research, 
which is essential in combating the HIV epidemic. 

96 



At the county level, the National Association of Counties' Task Force on HIV Infection and 
AIDS has both provided leadership and encouraged county officials to provide leadership 
through its Task Force Report, County Government and HIV Infection, through peer- 
education, technical assistance efforts, and developing community based, participatory 
strategic plans at the county level. 

The Task Force report also defines four broad policy goals for counties and lays out roles 
for counties in planning, education (e.g., employees, schools, emergency services workers, 
hospital personnel, and correctional facility staff), health care services, human rights 
financing, and county advocacy of appropriate federal and state roles. 

State 

Leadership at the state level, in the view of the National Governors' Association, can be 
exercised in a number of ways including: (1) establishing priorities and allocating resources 
for ADDS within the context of competing demands on the state's domestic policy agenda; 
(2) defining the state's mission and objectives in managing the AIDS epidemic; (3) 
enunciating a policy of caring for those with HIV disease; (4) mobilizing the citizenry and 
the private sector to address the AIDS crisis; (5) assigning responsibility for the state 
response to AIDS to a lead agency; (6) ensuring that consistent and coherent policies are 
developed and coordinated across state agencies having administrative purview over 
programs relating to AIDS (e.g., public health, education, medical treatment, and insurance 
regulation); (7) planning for the future and being aware of emerging issues and trends by 
ensuring that accurate and timely data are collected to provide a sound basis for public 
policy; and (8) establishing policies related to state employees and institutions that will set 
a standard for other employers in the state. The National Governors' Association has 
recently issued A Governor's Policy Guide on AIDS. 

States' key roles in public health, the organization, delivery, and financing of health care, 
and in other program and service areas shape their roles in response to the HIV epidemic. 
States play a critical role in several areas: (1) establishing policies related to Medicaid 
eligibility, scope of benefits, and provider reimbursement, and paying the state share of 
Medicaid; (2) regulating the activities of insurers and health maintenance organizations; (3) 
developing strategies to provide care for the medically indigent, or the uninsured; (4) 
administering public health programs; (5) administering social services programs; (6) 
administering substance abuse and mental health programs; (7) administering in some states 
a public hospital system; (8) licensing health care facilities and other residential facilities; 
and (9) licensing health care providers. 

Federal 

Despite a lack of overall leadership at the federal level, certain examples of federal 
leadership include the early and pivotal role of the Centers for Disease Control in 
epidemiologic studies to determine the modes of transmission of HIV infection and 
populations at risk of infection. Another example of federal leadership is the primary role 
of the National Institutes of Health in supporting intramural and extramural biomedical and 
clinical research leading to the discovery of the causative agent in HIV disease, the 
development of the HTV antibody test, and the development of drugs, such as AZT and 
aerosolized pentamidine. The federal government also has played a leadership role in the 



97 



development of guidelines for infection control and risk reduction, in protecting the blood 
and tissue supply, and in regulating the testing, licensure, and production of drugs, vaccines, 
diagnostic reagents, and medical devices. 

Partnership was another major theme emerging during the working group meeting. Clarity 
and agreement on the roles and responsibilities of different levels of government in 
responding to the HIV epidemic allow partnerships to be formed. Confusion and 
disagreement about these roles and responsibilities, on the other hand, lead to what was 
described as "haphazard, inconsistent, isolated" efforts. Implicit in the concept of a 
collaborative partnership among federal, state and local government is the obligation of 
each to participate in the partnership. The effectiveness of the partnership is enhanced by 
the material contribution of all members. Equally important is the essential role of the 
private sector, especially foundations and community based organization in these 
partnerships. 

It was also noted that here is no driving force forging these partnerships. Where there are 
functional partnerships among different levels of government, they were viewed as 
reinforcing, supportive, and enhancing, and leading to coordinated and integrated 
approaches to the development of policies, programs, and services. 

Ineffective partnerships were viewed as adversarial, competitive, duplicative, and depleting, 
and leading to uncoordinated and fragmentary approaches. 

In an effort to delineate government roles and responsibilities the Working Group 
participants identified the following policy, program, and service areas: 

1. Anti-discrimination/civil rights 

education 

employment 

housing 

public accommodations 

health and life insurance 

2. Health care financing, public and private 

Medicaid & Medicare 
private insurance 
uninsured 

3. Health care and social service organization and delivery 

4. Recruitment, retention, and training of human services personnel 

5. Housing 

6. Prevention, education, and information 

7. Substance abuse prevention and treatment 



98 



Research 

biomedical 

clinical 

epidemiologic 

behavioral and other social sciences 

health services research 

9. Epidemiologic surveillance 

10. Drug and medical device regulation 

11. Blood and tissue supply protection 

The Working Group also identified the following roles and functions of government: 
1. Assessment 



2. 


Policy setting 


3. 


Planning 


4. 


Program development 


5. 


Program administration 


6. 


Organization of services 


7. 


Delivery of services 


8. 


Regulation 


9. 


Monitoring and evaluation 



10. Technical assistance and capacity building 

11. Financing 

These roles and functions served as a guide to the Working Group in considering traditional 
responsibilities of government in policy program and service areas related to the epidemic. 

Areas of research, epidemiologic surveillance, drug and medical device regulation and blood 
and tissue supply protection were set aside for purposes of the meeting, as government roles 
in these areas are more clearly defined. Roles and responsibilities of federal, state, and 
local levels of government were often unclear or confusing in the remaining areas. The 
Working Group attempted to define the different roles of government in these areas. 
While it did not define the specific roles of federal, state, and local governments for all of 
the issues, the Working Group did agree on recommendations to be submitted for 
consideration by the Full Commission. 



99 



RECOMMENDATIONS 



1. Efforts in the public sector at all levels of government should be guided by broad policy 
goals. 

The Working Group suggested that the policy goals identified by the National Association 
of Counties Task Force on HIV Infection and AIDS could serve as a model for all levels 
of government. These goals are: 

1. to end the HIV epidemic through prevention, education and research; 

2. to assure access to treatment, care and support services for all persons 
with HIV infection; 

3. to protect the civil rights of all citizens; and 

4. to assure adequate funding for a continuum of HIV prevention, 
treatment, care and support services and HIV research through 
effective public sector-federal, state, and local government and private 
sector leadership and partnership. 

2. Federal, state and local governments should develop comprehensive plans for 
implementing identified goals. These plans should be developed in response to the policy 
recommendations of the National Commission on AIDS with interagency government 
representation and private sector involvement, including community-based organizations and 
persons with HIV disease. 

The Working Group strongly recommended that the federal government should 
immediately develop a forceful comprehensive national HIV plan addressing prevention, 
education, treatment, care, support services, civil rights, research, and funding for these 
activities. The President should designate a cabinet level task force to develop such a plan. 

While the National Commission on AIDS fully intends to recommend policy goals for a 
national plan, the Commission believes it is essential that a mechanism be in place to 
coordinate government-wide implementation of such a plan. In this way, those who are 
ultimately responsible for the implementation will have had an active role in its 
development, thus enhancing the likelihood of implementation. The task force should 
include each department in the federal government. 

3. The U.S. House of Representatives should, like the United States Senate, pass the 
Americans with Disabilities Act and state and local governments should pass laws 
forbidding discrimination in areas not covered by the Americans with Disabilities Act or 
other federal statutes. 

4. Immediate action is necessary at the federal level to assist states, counties, and cities 
disproportionately impacted by the HIV epidemic. "Impact Aid" - disaster relief or direct 
emergency relief - is needed to assist states and localities in developing a continuum of 
HIV prevention, treatment, care, and support services. 

5. The issues of Health Care Financing and Health Care and Social Service Organization 
and Delivery require a level of expertise and commitment of time that was not provided for 

100 



in this working group session. The Working Group believes these issues would be best 
addressed by the Full Commission. 

6. Incentives at the federal, state and local level need to be created to recruit, retain and 
train human services personnel. The Working Group recommends that the federal 
government should support a National Health Service Corps approach to involving more 
primary care providers in the care of persons with HIV. Medicaid reimbursement rates for 
outpatient care should be augmented and all universities (public and private) should include 
HTV education in health professional education and training. 

7. Federal, state and local government should have in place policies to encourage the 
development of housing programs that meet emergency, short-term and long-term needs of 
persons with HIV. Congress should support legislation to establish housing programs that 
provide short-term and long-term housing with necessary support services. State legislation 
should encourage flexibility in developing alternative housing and residential settings. 
Localities need to address the "not-in-my-backyard" syndrome related to shelters and 
residencies, and work closely with neighborhood groups. 

8. Federal, state and local governments and community-based agencies need to develop 
more effective partnerships in HIV prevention, education and information. The Working 
Group believes that federal restrictions on the use of education and prevention funds is 
counterproductive and prolongs the HIV epidemic. Restrictive legislative language appears 
to hinder states and localities and community-based agencies in providing the prevention 
message in ways that would reduce individual risk and limit the spread of HIV infection. 
Therefore, while state and localities should be accountable for the federal funds they 
receive, the use of these dollars for education and prevention programs should be flexible. 
Evaluation of these programs to determine what approaches work best is essential and 
these programs should be innovative, creative, and culturally respectful. Finally, since 
community-based organizations are at the heart of HIV education efforts, these agencies 
should be supported by all levels of government, including the provision of support for 
education and training of agency staff and organizational development assistance. 

9. The Working Group identified substance abuse prevention and treatment as a priority 
area but time did hot permit specific recommendations to be made. The Working Group 
recommends that the Full Commission address this issue. 

In conclusion, the working group meeting on federal, state, and local responsibilities of the 
National Commission on AIDS found significant problems in government response to the 
HIV epidemic and has proposed initial recommendations to address some of these 
problems. 



101 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



Press Release 
April 3, 1990 



Contact: Thomas Brandt 
202-254-5126 



CHAIRMAN 

June E. Osborn, M.D. 

MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Marlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S.. M.P.H. 

Donald S. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, MD. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



COMMISSION REVIEWS "RURALIZATTON" 
OF HIV EPIDEMIC 



The National Commission on AIDS will make site visits to Waycross, 
Albany and Macon, Georgia on April 16 and 17 to study the upsurge of the 
HTV epidemic in towns and rural communities. 

The rate of increase of new cases of HIV (human immunodeficiency 
virus) in major metropolitan areas such as New York and Los Angeles is now 
being matched by many small towns and rural communities in what the 
Centers for Disease Control calls the "ruralization of AIDS." 

Dr. June Osborn, Chairman of the National Commission, said, "The 
rapid increase in HIV infection in the rural heart of America is an 
unwelcome fact of life, and the drug associated virus spread in that context 
comes as a surprise to many people. We need to understand these dynamics 
if we are ever to put a stop to the further expansion of HTV infection and 
AIDS." 

Congressman J. Roy Rowland, a Georgia physician who is a member 
of the National Commission on AIDS, said, "Most of our national planning 
for AIDS has focused on the media intensive major cities. Yet the virus is 
infiltrating even our small towns and farm communities, often linked to 

-more- 



102 



substance abuse and heterosexual transmission, where HIV prevention programs and health 
care are often scarce or non-existent." 

The patterns of HIV transmission in rural areas were discussed in a recent report 
by the Georgia Department of Human Resources that said "crack use is as prevalent in 
rural Georgia as it is in the major metropolitan areas," and that "syphilis cases, once largely 
confined to the state's seven major urban areas, have shifted significantly to rural areas." 

The National Commission on AIDS is an independent body created by Congress to 
advise Congress and the President on development of a "consistent national policy" 
concerning the HIV epidemic. 

The 15-member Commission includes five voting members appointed by the Senate, 
five appointed by the House, and two appointed by President Bush. The three non-voting 
members are the Secretary of Health and Human Services, the Secretary of Defense, and 
the Secretary of Veterans Affairs. 

A copy of the Commission agenda is attached. 



# # # # 



103 



NATIONAL COMMISSION ON AIDS 

SITE VISITS 

GEORGIA 

APRIL 15 - 17, 1990 



Sunday. April 15. 1990 

Arrive Atlanta Hartsfield International Airport 

Check in 

Stouffer Waverly Hotel 
2450 Galleria Parkway 
Atlanta, Georgia 

Monday. April 16. 1990 

7:15 a.m. Meet in Main Lobby of Stouffer Waverly Hotel 

7:30 a.m. Depart Stouffer Waverly Hotel for Dobbins Airforce Base 

8:00 a.m. Depart Dobbins Airforce Base 

Waycross 

9:00 a.m. Arrive Brunswick, Georgia 

Depart for Waycross, Georgia 

Briefing 

Dr. Ted Holloway 

District Health Director 

Southeast Health Unit 

Georgia Department of Human Resources 

10:00 a.m. Community Site Visits 



104 



12:00 p.m. Lunch 

Community and Civic Leaders 
St. Joseph's Catholic Church 
2011 Darling Avenue 
Waycross, Georgia 



1:15 p.m. 


Depart for Airport 
Brunswick, Georgia 


2:30 p.m. 


Depart for Albany 




Albany 


3:30 p.m. 


Site Visit 

Phoebe Putney Memorial Hospital 

417 Third Avenue 

Albany, Georgia 


5:30 p.m. 


Depart for Airport 
Albany, Georgia 




Macon 



7:30 p.m. Reception and Dinner 

Hosted by Georgia Department of Human Services 

Holiday Inn 

Arkwright Road at Riverside Drive 

Macon, Georgia 



Tuesday. April 17. 1990 

8:00 a.m. Meet in Main Lobby of Holiday Inn 

Depart for Downtown Macon 

8:30 a.m. Site Visit 

Bibb County Department of Health 
HIV Ambulatory Clinic 
770 Hemlock Street 
Macon, Georgia 

12:00 p.m. Lunch 

2:00 p.m. Depart Holiday Inn for Atlanta Airport 



105 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



Press Release 
April 24, 1990 



Contact: Thomas Brandt 
202-254-5125 



CHAIRMAN 

June E. Osborn, M.D. 

MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S., M.P.H. 

DonaldS. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, M.D. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



COMMISSION RELEASES SECOND REPORT TO PRESIDENT BUSH 

In its second Report to President Bush, the National Commission on 
AIDS today made five major recommendations for swift action, including 
creation of a "federal interagency mechanism" to coordinate a national plan 
for the human immunodeficiency virus (HIV) epidemic. 

The Commission also called for support of "disaster relief legislation 
for cities and states heavily impacted by the HIV epidemic; federal housing 
aid to address the multiple problems faced by persons with HIV infection and 
AIDS, including many homeless people; support of anti-discrimination 
legislation; lifting of federal constraints that impede HIV education and 
prevention programs. 

Dr. June E. Osborn, chairman of the Commission, said, "Throughout 
the nine long years of the epidemic many people in various roles in the 
Federal government have worked desperately to keep pace with the 
expanding demands of the epidemic as it pervades society. 

"But a much more flexible and responsive mechanism is needed to 
coordinate the many components of governmental action. The President can 
be most helpful in creating such a coordinating body to provide focus at the 
top," she added. 

-more- 



106 



In commenting on the proposal for a new federal interagency mechanism, Dr. David 
E. Rogers, Vice Chairman of the Commission, said, "What mechanism would best serve the 
national needs, be it a Cabinet Officers' Task Force or a coordinating council, is obviously 
for the President to determine. 

"What is all too evident to the Commission is a critical lack of any top level federal 
group - clearly accountable and capable of swift, authoritative action - to coordinate efforts 
among HHS, HUD, Social Security, the VA and other government and private entities to 
deal with the AIDS crisis," he added. 

The report is the second sent to the President and Congress by the Commission 
which took office last August 3. Congress created the Commission as an independent body 
to advise the Executive and Legislative branches of government on development of "a 
national consensus on policy" concerning the HIV epidemic. 

The first report on December 5, 1989 cited a national health care system that was 
"singularly unresponsive to the needs of HIV-infected people" and called for a major federal 
effort to "begin solving the problems of health care delivery." 

Today's report goes beyond those issues to say that failures in health care and many 
other HIV epidemic related matters can only be corrected with federal leadership and a 
"clear definition of government roles at all levels...." The report's summary said that such 
lack of definition "has hampered our national ability to organize health care services, to 
recruit and train human services personnel, to provide housing for the sick, to provide 
effective AIDS education and prevention programs, to provide coordinated, comprehensive 
substance abuse treatment and prevention and to develop sufficient monies to finance all 
of these efforts." 

-more- 

107 



The Commission's four other recommendations to the President and Congress are: 
"Disaster relief funds for those cities and states that are the 
most heavily impacted by the HIV epidemic. 
Federal housing aid to address the multiple problems posed by 
HIV infection and AIDS. 

Passage of the Americans with Disabilities Act (ADA) to 
provide protection against discrimination for those with HIV 
infection and AIDS. State and local governments should also 
pass laws forbidding discrimination in areas not covered by the 
ADA or other federal statutes. 

Lifting of federal restrictions that are impeding the effective use 
of funds for HIV prevention and education programs. 

Since August, 1989 the Commission has held nine days of hearings in Washington 
and Los Angeles plus four additional days of working group meetings in Boston and St. 
Paul. The Commission has also made site visits to Los Angeles, Newark, Jersey City, New 
York City and rural areas of Georgia where it has focused on a number of issues including 
the impact of the HIV epidemic on the homeless, substance users, women, children, 
Hispanics, Afro-Americans and other minorities. 

The report also congratulated President Bush for his "important and historic" speech 
on the HIV epidemic on March 29. 

"His call for more preventive education, vaccines and new therapies to improve the 
care for the increasing number of Americans who will fall ill with this disease moves this 

- more - 



108 



nation in the proper direction. Now the President's commitment needs translation into 
action," the Commission report said. 

The 15-member Commission includes five voting members appointed by the Senate, 
five appointed by the House and two appointed by President Bush. The three non-voting 
members are the Secretary of Defense, the Secretary of Health and Human Services, and 
the Secretary of Veterans Affairs. 



# # # # 



109 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn, M.D. 

MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S., M.P.H. 

Donald S. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, M.D. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



April 24, 1990 

President George Bush 
The White House 
Washington D.C. 20500 

Dear President Bush: 

We much appreciated your meeting with us on March 29 and your historic 
speech that same day. 

In our continuing effort to bring important and urgent matters to your 
attention, and to the attention of Congress, enclosed is a second report on the 
HIV epidemic from the National Commission on Acquired Immune 
Deficiency Syndrome (AIDS). Again, it contains a short series of 
recommendations for swift action. 

Sincerely, 



David E. Rogers, M.D. 
Vice Chairman 



June E. Osborn, M.D. 
Chairman 



cc: 



The Honorable Robert C. Byrd 
President Pro Tempore of the Senate 

The Honorable George J. Mitchell 
Majority Leader of the Senate 

The Honorable Bob Dole 
Minority Leader of the Senate 

The Honorable Thomas S. Foley 
Speaker of the House of Representatives 

The Honorable Richard A. Gephardt 

Majority Leader of the House of Representatives 

The Honorable Robert H. Michel 

Minority Leader of the House of Representatives 



110 



National Commission 

on 

Acquired Immune Deficiency Syndrome 

Report Number Two 



INTRODUCTION 

On December 5, 1989, the National Commission on AIDS wrote to President Bush 
indicating that "significant changes must be made not only in our health care system but in 
how we think about the system and the people it is designed to serve." It was also the 
Commission's belief that a clear statement from the President indicating that in this crisis, 
care must be dispensed equitably, non-judgmentally, and without discrimination to all who 
had AIDS and HIV infection would do much to improve the climate and permit swifter 
progress in combatting this tragic epidemic. 

On March 29, 1990, in a speech to a national meeting of business leaders the President 
responded to the Commission's call. In it he said: 

"And for those who are living with HIV and AIDS, our response is clear: 
They deserve our compassion. They deserve our care. And they deserve 
more than a chance~they deserve a cure.... In this Nation, in this decade, 
there is only one way to deal with an individual who is sick. With dignity, 
compassion, care, confidentiality, and without discrimination." 

In addition to establishing a national standard for caring for people living with HIV 
infection and AIDS, the President outlined the challenges confronting all of us in the HIV 
epidemic. 

"It is our duty to make certain that every American has the essential 
information needed to prevent the spread of HIV and AIDS. Because while 
the ignorant may discriminate against AIDS, AIDS won't discriminate among 
the ignorant." 

"Once disease strikes~we don't blame those who are suffering. We don't 
spurn the accident victim who didn't wear a seatbelt. We don't reject the 
cancer patient who didn't quit smoking. We try to love them and care for 
them and comfort them. We do not fire them, or evict them, or cancel their 
insurance." 

We congratulate the President on his important and historic statement. It sets the 
stage for expansion of efforts of critical importance if we are to genuinely contain the 
spread of the HIV epidemic. His call for more preventive education, vaccines and new 
therapies to improve the care for the increasing number of Americans who will fall ill with 
this disease moves this nation in the proper direction. Now the President's commitment 
needs translation into action. 

Since 1981, more than 75,000 people have died of AIDS and the 1990's will be much 

111 



worse than the 1980's. This second report from the National Commission on AIDS to the 
President and the Congress highlights another set of critical issues and focuses on the 
particular needs of communities most heavily impacted by the epidemic. It contains an 
additional five recommendations for swift action. 



OVERVIEW 

"Much in AIDS care is happening all over this nation. But like an orchestra 
without a conductor, we are all playing our own tune. Sometimes we 
harmonize, sometimes we don't.... It's pretty tough without a conductor." 

The above quote is from National Commission Member Diane Ahrens summarizing the 
testimony the Commission received at a Working Group Meeting in St. Paul, Minnesota. 
The call for leadership in response to the Human Immunodeficiency Virus (HIV) epidemic 
was heard repeatedly during the Commission's hearing in Southern California and again 
during our visit to New York City's homeless shelters and New Jersey's hospital and drug 
treatment programs. 

We were told, "Governments must assume leadership in this crisis," and, "Leaders often 
must take unpopular stances and try that which has not been tried." And, we were 
reminded that Thomas Jefferson once said, "The care of human life and happiness is the 
first and only legitimate object of good government." The President's speech was an 
important initial step in this direction. 



COMMISSION FINDINGS 

Nowhere was it more evident that the care of human life must be a priority for our 
government than in the streets of New York City. Here the estimates of the numbers of 
homeless vary from 20,000 to as many as 70,000. It is further estimated that 20 to 30 
percent of the overall number of homeless individuals are HIV positive. Perhaps 10,000 
have AIDS or HIV-related illness. They live in places that are beyond belief in their 
horror. We heard that the number of homeless in New York City now exceeds the number 
seen at the height of the great depression. "The new Calcutta" is a term now often applied 
to this, our premier city. 

On February 26th, the Commission visited a variety of homeless "shelters"-- ranging 
from subway tunnels to flophouses to an aging armory. At the armory, which can really 
best be described as a human warehouse, we stood on a balcony and saw stretched out 
below us nearly 900 tightly packed cots in a gloomy, cavernous old building. Each night the 
cots are filled with homeless men. The very great likelihood is that many of those huddled 
there (we visited on the coldest night of the year) were infected with HIV. While we were 
there two homeless men, showing their positive tuberculin skin tests to us, voiced their 
concern that~"people who are extra-susceptible to infections should never be sleeping in a 
place like this!" 

Fort Washington Armory was not the only human catastrophe we witnessed. During 
our travels we heard about families not only broken but kept asunder by rigid visitation 
rules for addicted mothers-even those under treatment. We met women with HIV 

112 



infection who sleep in shelters during the night and struggle to maintain their health (and 
their children) on the streets and in the shelters during the days. We heard about a 
supportive housing program that funds only 140 units when at least 2,400 could be filled 
immediately. We talked to teenagers who trade sex for drugs and money, putting 
themselves at risk for HIV infection everyday. Now referred to as "fhrowaway kids," these 
teenagers seek shelter not only from the cold but from the Hudson River piers and 
neighborhood streets where adults visiting from out of town, out of state, and, in some 
cases, out of the country, seek sex for $15 without a condom and $10 with one. 

We met with outreach workers who go down into the subway tunnels day after day 
fighting a battle where they have no ammunition and, indeed, no battlefield on which to 
stand. The outreach workers hope that one day the "down under" people will come to one 
of the day programs offered in the Bowery where they can receive medical assessment, 
treatment and referrals. "Many homeless people are suspicious of promises made for better 
lives," staff of the Bowery Residence Committee (BRC) told the Commission. 'Too often 
these promises have been broken." In fact, the promise of health care for many of the 
homeless HIV-infected population in New York's Bowery will be further delayed if, as we 
were told, the federal dollars are terminated. 

In California, New York and New Jersey, we heard repeatedly about the "disaster 
relief needed from the federal government for those cities hardest hit by the epidemic. 

In Los Angeles, the Commission was deeply troubled by the hamstringing restrictions 
on the use of public dollars imposed by the elected local officials. Here local decision 
makers are prohibited from initiating the very efforts that could prevent further spread of 
the epidemic in a county with the second highest number of reported cases of AIDS in the 
United States. 

In some areas of California there is absolutely no outpatient care available to people 
with HIV infection and AIDS. In yet other areas, there are six to eight week waits for 
outpatient services. "Outrage," the Commission was told, "is the only morally credible 
response." 

In February of 1990, the Commission visited a drug treatment program in Northern 
New Jersey. We were told that, this year, New Jersey received in excess of $6 million in 
federal funds to reduce its waiting list for drug treatment services. New Jersey created 
more than 1,000 new treatment slots with the funds, but the Commission was told these 
funds will run out at the end of September. When we asked what drug treatment 
programs would do when the one-year-only federal dollars run out the response was, "Serve 
more with less - just like we always do." New Jersey ranks fifth among the states in its 
reported number of AIDS cases and first in its proportions of cases among intravenous drug 
users, minorities, women and children. 

Across the country, the Commission also heard tales of health care denied unless it 
required acute hospitalization, and we heard desperate pleas that something be done to 
insure that all hospitals participate equally in provision of under-reimbursed AIDS care, 
rather than continue the grossly disproportionate distribution resulting from the subtle 
"patient dumping" now apparently practiced all too frequently in too many parts of the 
country. 

113 



SUMMARY 

A lack of clear definition of government roles at all levels has hampered our national 
ability to organize health care services, to recruit and train human services personnel, to 
provide housing for the sick, to provide effective AIDS education and prevention programs, 
to provide coordinated, comprehensive substance abuse treatment and prevention and to 
develop sufficient monies to finance all of these efforts. All across the country there is a 
cry for leadership from the federal government and partnership between the different levels 
of government. There is no question that there have been creative and often heroic efforts 
at every level of government to address the HIV epidemic, but coordination of these efforts 
is the missing link to an effective national strategy. 

We are increasingly convinced that one set of actions recommended in our first report 
must be swiftly implemented. A national plan, with clearly delineated responsibilities and 
agreement on the roles of federal, state and local government and the private sector is 
essential and long overdue. If we are to respond effectively to the HIV epidemic we must 
have a clear cooperative plan and make responsible use of the limited dollars available. 



The National Commission on AIDS, therefore, makes the following recommendations: 

1. The National Commission on AIDS will continue to recommend policy goals for a 
national plan. However, the Commission believes it is essential that a federal 
interagency mechanism be in place to coordinate a national plan. In this way, those 
who are ultimately responsible for the implementation will have an active role in its 
development. 

2. Federal disaster relief or direct emergency relief is urgently needed to help states 
and localities most seriously impacted to provide the HIV prevention, treatment, 
care and support services now in short supply. The Commission strongly supports 
the efforts in Congress, now embodied in S.2240, to address this need. The 
resources simply must be provided now or we will pay dearly later. 

3. Housing is an absolutely vital component of any comprehensive effort to address the 
multiple problems posed by HIV infection and AIDS. While the Commission 
recognizes that coordination between the state and local government, with input 
from community based organizations, is essential to effectively respond to the 
homeless crisis, we also believe the federal government must take the lead in 
providing the dollars needed to respond to this overwhelming, indeed catastrophic, 
problem. 

4. Government restrictions imposed on the use of education and prevention funds are 
seriously impeding HIV control. They are clearly serving to prolong the HIV 
epidemic and should be removed. 

5. Because the Americans with Disabilities Act (ADA) guarantees protection against 
discrimination for people with HIV infection and AIDS, the National Commission 
on AIDS strongly urges the U.S. House of Representatives to pass the ADA in a 
swift and timely manner. State and local governments should pass laws forbidding 
discrimination in areas not covered by the ADA or other federal statutes. 

114 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street. N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn. M.D. 

MEMBERS 

Diane Ahrens 

Scon Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz. M.S.. M.P.H. 

Donald S. Goldman. Esq. 

Don C. DesJarlais. Ph. D. 

Larry Kessler 

Charles Konigsberg. M.D.. M.P.H. 

Belinda Mason 

David E. Rogers. M.D. 

Hon. J. Roy Rowland, MD. 

Hon. Louis W. Sullivan. MD. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



Press Release 
May 1, 1990 



Contact: Thomas Brandt 
202-254-5125 



COMMISSION TO REVIEW 
RESEARCH INITIATIVES 



The National Commission on AIDS will hold hearings in Washington 
on May 7 and 8 to review current research initiatives related to HIV infection 
and AIDS. 

On both days Commissioners will hear from representatives from a 
number of groups, including the Institute of Medicine, the Food and Drug 
Administration, ACT UP, the National Institutes of Health, Project Inform, 
the Pharmaceutical Manufacturers Association, community research projects, 
the American Association of Physicians for Human Rights, and persons living 
with AIDS. 

The hearings both days will start at 8 a.m. and will be held at the Pan 
American Health Organization, 525 23rd St. NW, Washington, D.C. (Foggy 
Bottom Metro stop). A copy of the agenda is attached. 

Dr. June E. Osborn, Chairman of the National Commission on AIDS, 
said, "What the Commission seeks to do is update our understanding of the 
progress in biomedical and therapeutic sciences, particularly as they relate to 
active care strategies for persons with HIV disease and AIDS." 



-more- 



115 



Another member of the Commission, Dr. Don C. Des Jarlais, said, "Biomedical 
research in AIDS has been among the most productive and controversial in the history of 
medicine. The nation needs a systematic understanding of where we have been and where 
we are going in AIDS research. 

"It is changing the way we think about research on fatal illnesses. However right now 
we don't even have a good method for setting priorities," he added. Dr. Des Jarlais is also 
Director of Research at the Chemical Dependency Institute of Beth Israel Medical Center 
in New York City. 

The National Commission on AIDS is an independent body created by Congress to 
advise Congress and the President on development of a "consistent national policy" 
concerning the HIV epidemic. 

The 15-member Commission includes five voting members appointed by the Senate, 
five appointed by the House, and two appointed by President Bush. The three non-voting 
members of the Commission are the Secretary of Health and Human Services, the Secretary 
of Defense, and the Secretary of Veterans Affairs. 



# # # # 



116 



NATIONAL COMMISSION ON AIDS 

AGENDA 

MAY 7-8, 1990 

Pan American Health Organization Building 

525 23rd Street N.W. 

Meeting Room B 

Washington, D.C. 



Monday. Mav 7. 1990 



8:00 a.m. NATIONAL ACADEMY OF SCIENCES OVERVIEW 

Samuel O. Thier, M.D., President, Institute of Medicine 
Robin Weiss, M.D, Director, AIDS Activities, Institute of Medicine 
Charles Turner, Ph.D, Director, Committee on AIDS Research and the 
Behavioral, Social, and Statistical Sciences, National Research Council 

9:00 a.m. DRUG DEVELOPMENT AND APPROVAL OVERVIEW 

Ellen C. Cooper, M.D., M.P.H., Director, Division of Antiviral Drug Products, 

Food and Drug Administration 
Gerald Quinnan, M.D., Deputy Director, Center for Biologies Evaluation and 

Research, Food and Drug Administration 
Joel Solomon, Ph.D., Director, Division of Blood and Blood Products, Center 

for Biologies Evaluation and Research, Food and Drug Administration 
John C. Petricciani, M.D., Vice President, Medical and Regulatory Affairs, 

Pharmaceutical Manufacturers Association 

9:45 a.m. BREAK 

10:15 a.m. NATIONAL INSTITUTES OF HEALTH OVERVIEW 

Anthony S. Fauci, M.D., Director, Office of AIDS Research, National 

Institutes of Health 
Philip A. Pizzo, M.D., Chief of Pediatrics, Head, Infectious Disease Section, 

National Cancer Institute 
Janet Heinrick, Dr.P.H., R.N., Director, Division of Extramural Programs, 

National Center for Nursing Research 

11:30 a.m. COMMUNITY NEEDS AND PERSPECTIVES 

Sonia Singleton, Community Outreach Education and Prevention Inc., Miami, 
Florida 
Jim Eigo, M.F.A., ACT UP 



117 



Neil Schram, M.D., Chair, AIDS Task Force, American Association of 

Physicians for Human Rights 
John Caldwell, Project Inform 
Luis Hernandez, Outreach Assistant Coordinator, Community Research 

Initiative, New York 
Rosa Martinez, Pediatric AIDS Advocate, Tampa, Florida 

1:00 p.m. LUNCH 

2:00 p.m. COMMISSION BUSINESS 

4:00 p.m. ADJOURN 



Tuesday. May 8. 1990 

8:00 a.m. SCIENTIFIC AND CARE COMMUNITY 
Panel I 

Gerald Friedland, M.D., Professor of Medicine, Epidemiology and Social 

Medicine, Albert Einstein College of Medicine 
Donald I. Abrams, M.D., Chair and Principal Investigator, Community 

Consortium, San Francisco General Hospital 

Melanie Thompson, M.D., President, AIDS Research Consortium of Atlanta 
George Perez, M.D., Medical Director, North Jersey Community Research 

Initiative 

Panel II 

Cecelia Hutto, M.D., Assistant Professor of Infectious Diseases and 

Immunology, Department of Pediatrics, University of Miami School of 

Medicine 
Janet L. Mitchell, M.D., M.P.H., Chief of Perinatology, Department OB- 

GYN, Harlem Hospital Center 

Amy Simon-Kramer, R.N., M.P.A., National Hemophilia Foundation 
Mathilde Krim, Ph.D., Co-Chair, Committee on Research, National 

Organization Responding to AIDS 
Ronald Sable, M.D., Co-founder, AIDS Program, Cook County Hospital 

10:15 a.m. BREAK 



118 



10:45 a.m. RESEARCH AND DEMONSTRATION PROJECTS 

John K. Watters, Ph.D., Assistant Adjunct Professor, Department of 

Epidemiology and Biostatistics, University of California, San Francisco 
Patricia Mclnturff, M.P.A., Director, Regional Division, Seattle-King County 

Comprehensive AIDS Services Program, Seattle-King County Department 

of Public Health 
Anita Vaughn, M.D., Medical Director, Newark Community Health Centers, 

Inc. 

12:30 p.m. LUNCH 

1:30 p.m. COMMISSION BUSINESS 

3:30 p.m. ADJOURN 



119 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5125 [FAX] 254-3060 



CHAIRMAN 

June E, O shorn, M.D. 

MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Marlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S., M. P. H. 

DonaldS. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, M.D. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



May 7, 1990 

The Honorable George J. Mitchell 

Majority Leader 

U. S. Senate 

S-221 Capitol Building 

Washington, D. C. 20510 

Dear Mr. Majority Leader: 

As you know, the National Commission on AIDS recently issued the 
second in a series of reports on the HIV epidemic. A copy of the report, 
dated April 24, 1990, was sent to you. We will continue to bring urgent 
matters to the attention of Congress and the President. 

In our latest report, we urged the President and the Congress to 
provide federal disaster relief to help states and localities most seriously 
impacted by the HIV epidemic. We indicated support for efforts in Congress, 
now embodied in S. 2240, the Comprehensive AIDS Resources Emergency 
(CARE) Act of 1990, to address this need. 

In a statement issued by the Commission upon the introduction of S. 
2240, we noted that the health care system in this country is not working well 
and nowhere is that more evident than for people with HIV infection and 
AIDS. While AIDS is not the cause of the health care system's disarray, its 
epidemic nature has accelerated the urgent need for responsible national 
action to correct the system's serious shortfalls. 

The Commission is extremely pleased that over 60 Senators, including 
you, have joined Senators Kennedy and Hatch in support of this legislation. 
With the FY'91 appropriation process now underway, we urge the leadership 
to move the bill with all deliberate speed. The resources simply must be 
provided now or we will pay dearly later. 

Given the gravity of the HIV epidemic, we are fortunate to have an 
abundance of sound data on which to base our public health policy decisions. 
With this in mind, the National Commission on AIDS stands ready to review 
and comment on any proposals under consideration by the Congress. 



Sincerely, 



David E. Rogers, M.D. 
Vice-Chairman 



^June E. Osborn, M.D. 



Chairman 



120 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn, M.D. 

MEMBERS 

Diane Ahrens 

Scon Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S., M.P.H. 

Donald S. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, MD. 

Hon. J. Roy Rowland, MD. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



May 7, 1990 

The Honorable Bob Dole 

Minority Leader 

U. S. Senate 

S-230 Capitol Building 

Washington, D. C. 20510 

Dear Mr. Minority Leader: 

As you know, the National Commission on AIDS recently issued the 
second in a series of reports on the HIV epidemic. A copy of the report, 
dated April 24, 1990, was sent to you. We will continue to bring urgent 
matters to the attention of Congress and the President. 

In our latest report, we urged the President and the Congress to 
provide federal disaster relief to help states and localities most seriously 
impacted by the HIV epidemic. We indicated support for efforts in Congress, 
now embodied in S. 2240, the Comprehensive AIDS Resources Emergency 
(CARE) Act of 1990, to address this need. 

In a statement issued by the Commission upon the introduction of S. 
2240, we noted that the health care system in this country is not working well 
and nowhere is that more evident than for people with HIV infection and 
AIDS. While AIDS is not the cause of the health care system's disarray, its 
epidemic nature has accelerated the urgent need for responsible national 
action to correct the system's serious shortfalls. 

The Commission is extremely pleased that over 60 Senators, including 
you, have joined Senators Kennedy and Hatch in support of this legislation. 
With the FY'91 appropriation process now underway, we urge the leadership 
to move the bill with all deliberate speed. The resources simply must be 
provided now or we will pay dearly later. 

Given the gravity of the HIV epidemic, we are fortunate to have an 
abundance of sound data on which to base our public health policy decisions. 
With this in mind, the National Commission on AIDS stands ready to review 
and comment on any proposals under consideration by the Congress. 



David E. Rogers, M.D. 
Vice-Chairman 



Sincerely, 

June E. Osborn, M.D. 
Chairman 



121 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



FOR IMMEDIATE RELEASE 
May 11, 1990 



Contact: Thomas Brandt 
(202) 254-5125 



CHAIRMAN 

June E. Osborn, M.D. 

MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz. M.S., M.P.H. 

Donald S. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, M.D. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



STATEMENT ON THE AIDS PREVENTION ACT (H.R.4470) 
& THE MEDICAID AIDS AND fflV AMENDMENTS ACT (H.R.4080^ 



The National Commission on AIDS endorses the principles and 
objectives of the AIDS Prevention Act of 1990 (H.R.4470) and the Medicaid 
AIDS and fflV Amendments Act of 1990 (H.R.4080). This legislation is 
responsive to many of the recommendations of the National Commission on 
AIDS and the Presidential Commission on the HIV Epidemic. 

There must be frank recognition that a health care crisis exists in many 
of our cities that will require extraordinary measures to overcome. The HIV 
epidemic of the 1990's will be far worse than what we have seen thus far. Our 
Nation simply must be prepared to invest adequate resources now or pay 
dearly later. 

The AIDS Prevention Act of 1990 will provide emergency funds to 
those areas hardest hit by the epidemic. It will expand the availability of HIV 
testing and counseling and the accessibility of early intervention drugs which 
have been found to prolong life and prevent serious deterioration of health 
for those with fflV infection and AIDS. This legislation will also authorize 
demonstration projects that will provide comprehensive treatment services for 
fflV infection and AIDS. 

The Medicaid AIDS and HTV Amendments Act of 1990 will provide 
states with the option to expand Medicaid services to provide home and 
commumty based services for children with AIDS, to assure continuity of 
private insurance coverage for people with HIV infection and AIDS, and to 
expand availability of early intervention drugs under Medicaid for income 
eligible individuals with compromised immune systems. This legislation also 
recognizes the financial problems now facing hospitals treating individuals 
with AIDS and fflV infection. 

The health care system in this country is not working well and nowhere 
is that more evident than for people with HIV infection and AIDS. While 
AIDS is not the cause of the health care system's disarray, its epidemic nature 
has accelerated the urgent need for responsible national action to correct the 
system's serious shortfalls. 

The Commission is pleased that these bills are moving forth in the 
legislative process and looks forward to the passage and funding of 
comprehensive AIDS care legislation by the 101st Congress. 



122 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn, MD. 



May 24, 1990 



MEMBERS 

Diane Ahrens 

Scon Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz. M.S., MJP.H. 

Donald S. Goldman. Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, MD., M.P.H. 

Belinda Mason 

David E. Rogers. MD. 

Hon. J. Roy Rowland. MD. 

Hon. Louis W. Sullivan, MD. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



The Honorable Edward M. Kennedy 
The Honorable Orrin G. Hatch 
Committee on Labor & Human Resources 
U.S. Senate 
Washington, DC 20510 

Dear Senators Kennedy and Hatch: 

We are writing to underscore our support for the Americans with 
Disabilities Act and to reiterate our concern about any amendment reducing 
its scope of coverage for persons with HTV infection. As you may recall, the 
National Commission on AIDS issued a statement to that effect at the outset 
of its work in September, 1989, a copy of which is attached. 

As Secretary of HHS, Dr. Louis Sullivan has stated, "Any policy based 
on fears and misconceptions about HTV will only complicate and confuse 
disease control efforts without adding any protection to the public health." 
The amendment concerning food handlers narrowly adopted by the House 
only reinforces unwarranted fear and perpetuates the discrimination that the 
ADA is designed to end. All evidence indicates that bloodborne and sexually 
transmitted diseases such as HTV are not transmitted through food-handling 
processes. Simply put, this amendment is bad public health policy. 

We hope that the conference deliberations can yield a bill that fully 
protects persons with HTV infection from fear and discrimination, without 
exception. 



Sincerely, 



David E. Rogers, M.D. 
Vice-Chairman 



J June E. Osborn, M.D. 
Chairman 



/enclosure 



123 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street. N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



June 6, 1990 



CHAIRMAN 

June E. Osborn. M.D. 

MEMBERS 

Diane Ahrens 

Scon Allen 

Hon. Dick Cheney 

Harlon L. Dalton. Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S., M.P.H. 

DonaldS. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., MP H 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, M.D. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



The Honorable Thomas S. Foley 

Office of the Speaker 

H-204 Capitol Building 

U.S. House of Representatives 

Washington, DC 20515 

Dear Mr. Speaker: 

We are writing to express our concern about any amendment to the 
AIDS Prevention Act, H.R.4785, which would federally mandate the reporting 
of names of HIV infected individuals to state health authorities. 

As you may know, the National Commission on AIDS issued a 
statement on May 11, 1990 in support of the principles and objectives of the 
AIDS Prevention Act as reported out of the Subcommittee on Health and the 
Environment. A copy of the statement is attached. 

With respect to partner notification programs, the Commission believes 
that the current language in H.R. 4785 is sufficient, as it orders the State to 
provide assurances that it will require that the State public health officer, "to 
the extent appropriate in the determination of the officer, carry out a 
program of partner notification regarding cases of infection with the etiologic 
agent for acquired immune deficiency syndrome." To go further with a 
federal mandate would be counterproductive. 

The need for reporting of names or other identifying information of 
individuals who test positive for HIV is a decision best left to the 
departments of health in each state. While numerous states have chosen to 
adopt some kind of name reporting system, many of these same states have 
continued to provide anonymous testing services and have allowed for locally 
generated approaches to counseling and testing for HIV infection. 
Appropriately, these systems were developed by the state health officials 
based on such factors as level of incidence, demographic data, and the 
availability of resources within the state. 

We urge the Congress to resist attempts to impose a federal mandate 
on the states for name reporting. 



David E. Rogers, M.D. 
Vice-Chairman 



Sincerely, 

#June E. Osborn, M.D. 
Chairman 



124 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



June 6, 1990 



CHAIRMAN 

June E. Osborn, M.D. 

MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S., M.P.H. 

Donald S. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsherg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, M.D. 

Hon. Louis W. Sullivan, M. D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



The Honorable Robert H. Michel 
Office of the Minority Leader 
H-230 Capitol Building 
U.S. House of Representatives 
Washington, DC 20515 

Dear Mr. Minority Leader: 

We are writing to express our concern about any amendment to the 
AIDS Prevention Act, HR.4785, which would federally mandate the reporting 
of names of HIV infected individuals to state health authorities. 

As you may know, the National Commission on AIDS issued a 
statement on May 11, 1990 in support of the principles and objectives of the 
AIDS Prevention Act as reported out of the Subcommittee on Health and the 
Environment. A copy of the statement is attached. 

With respect to partner notification programs, the Commission believes 
that the current language in H.R. 4785 is sufficient, as it orders the State to 
provide assurances that it will require that the State public health officer, "to 
the extent appropriate in the determination of the officer, carry out a 
program of partner notification regarding cases of infection with the etiologic 
agent for acquired immune deficiency syndrome." To go further with a 
federal mandate would be counterproductive. 

The need for reporting of names or other identifying information of 
individuals who test positive for HIV is a decision best left to the 
departments of health in each state. While numerous states have chosen to 
adopt some kind of name reporting system, many of these same states have 
continued to provide anonymous testing services and have allowed for locally 
generated approaches to counseling and testing for HIV infection. 
Appropriately, these systems were developed by the state health officials 
based on such factors as level of incidence, demographic data, and the 
availability of resources within the state. 

We urge the Congress to resist attempts to impose a federal mandate 
on the states for name reporting. 

Sincerely, 
David E. Rogers, M.D. # June E. Osborn, M.D. 



David E. Rogers, M.D. 
Vice-Chairman 



i/June n. Osborn, 
Chairman 



125 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn, M.D. 

MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S., M.P.H. 

DonaldS. Goldman, Esq. 

Don C. DesJarlais. Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, M.D. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



TESTIMONY 
before the 

SUBCOMMITTEE ON HEALTH & THE ENVIRONMENT 



COMMITTEE ON ENERGY & COMMERCE 
U.S. HOUSE OF REPRESENTATIVES 



June 27, 1990 



by 



DONALD S. GOLDMAN, ESQ. 

Commissioner 



126 



Good afternoon, Mr. Chairman and Members of the Committee. My name is 
Donald S. Goldman. I am an attorney in the private practice of law in West Orange, New 
Jersey, former President and Chairman of The National Hemophilia Foundation, the United 
States delegate to the World Federation of Hemophilia, and a Vice President of the 
National Health Council. I appear before you as a member of and on behalf of the 
National Commission on Acquired Immune Deficiency Syndrome which was created to 
advise the Congress and the President on issues relating to AIDS and HIV infection. 
Today my comments relate to U.S. immigration and visa policies. 

Many of us on the Commission were long aware of U.S. immigration and visa 
policies. Our distinguished chair, Dr. June Osborn, sits on the World Health Organization's 
Global Commission on AIDS. Concern regarding U.S. immigration and visa policies was 
brought to the Commission's attention by a number of individuals and organizations. 
Among them was Charles J. Carman, President of the World Federation of Hemophilia, 
who asked us to do something about a U.S. visa policy threatening vital global cooperation 
by restricting entry to vital international conferences such as the World Federation of 
Hemophilia's XIX Congress scheduled for August here in our nation's capitol. I understand 
Mr. Carman will also be testifying before you this afternoon. 

The Commission launched a study of the issues and prepared a documented working 
paper for the Commission's consideration. Following its review, the Commission issued a 
Resolution on December 12, 1989 calling upon the Administration to rectify the many 
problems created by current policy. I have included a copy of the Commission's Resolution 
with my formal testimony. The Commission was joined in a resounding chorus of other 
responsible organizations and agencies including the World Health Organization, the Red 
Cross, the American Bar Association, the National Association of Persons with AIDS and 
many others. 

The Commission's basic message was simple. Our nation's public health is too 
important to be trusted to anyone but our nation's leading public health officials. Public 
health policy in this area should not be based upon myth, prejudice nor social stigmatization 
as it has often been in the past. Public health officials should decide which of hundreds of 
contagious diseases should bar entry. They should be free to add or subtract from that 
list as new diseases are discovered or new treatments and cures are found. 

What must not happen is the process surrounding the amendment offered by Senator 
Helms which was attached to the 1987 Appropriations Bill from the floor and without 
benefit of a single committee hearing. This amendment, the Administration now claims, 
ties the hands of the Public Health Service and the Secretary of Health and Human 
Services from achieving a rational public health policy. 

What is the impact of having allowed politics to interfere with public health? The 
impact was made all too vivid during last week's Sixth International Conference on AIDS. 
U.S. travel policy restrained thousands from participation, whether through conscience or 
fear. It made those who were there poorer for the absence of their international colleagues 
and those living with HIV. It was embarrassing to our country, which should serve as a 
proud beacon for emerging democracies and instead was a model of misguided and 
irrational policy-making. 

127 



There is a special irony to U.S. travel restrictions. The U.S., an area with a high and 
early incidence of AIDS, has long been viewed as a source of HIV infection. This makes 
U.S. policy particularly anomalous and inflammatory because it is directed to parts of the 
world with far lower rates of HIV infection. The message sent by these restrictions runs 
against everything we know about HIV since the best protection against it is a 
knowledgeable citizenry not legal barriers. 

U.S. travel policy also has symbolic meaning. While the President and this Congress 
have stood so strongly behind the principle that, to quote President Bush, "We won't 
tolerate discrimination," U.S. travel policy undermines that effort. Allowing such restrictions 
to stand when public health officials say they are senseless merely validates discrimination. 
This Commission, President Reagan's Presidential Commission, and virtually every panel 
of experts ever convened are unanimous that abolishing discrimination is the most critical 
element in the war against HIV. 

The Administration's response, a special 10 day visa, is not an answer. The 
European Parliament gave unanimous voice to its inadequacy by passing a resolution 
stating, "The exemption procedures introduced by the American Government undermine 
the principles of confidentiality for persons affected by HIV." The Parliament went on to 
urge that the conference be transferred to countries which do not practice such unjustified 
discrimination. 

I can assure you that international attendance at the World Hemophilia meeting has 
already been decimated. I can assure you that under present circumstances, many 
international congresses will no longer grace our shores. I can assure you that the laudable 
efforts of this Administration to demonstrate that we are at war with a disease and not the 
people who suffer from it will be undermined. 

At present, however, the Administration will not move further without a 
congressional mandate, yet its own public health officials have reviewed and underscored 
that there is no public health justification for having HIV infection on the list of dangerous 
contagious diseases. The Congress will have to act if we are to end the discriminatory 
effect of our policy towards people with HIV who wish to travel or immigrate to the U.S. 

A major step forward would be the passage of H.R. 4506, sponsored by my esteemed 
colleague on the Commission Representative J. Roy Rowland. His legislation would give 
clear authority to those best qualified to make public health determinations, the Secretary 
of Health and Human Services and the Public Health Service. It would and should be only 
they who determine which contagious diseases bar entry to our country. The Commission 
urges the Committee and the Congress to move swiftly in passing the Rowland bill. 



128 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn, M.D. 

MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton. Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz. M.S., M.P.H. 

Donald S. Goldman. Esq. 

Don C. DesJarlais. Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D.. M.P.H. 

Belinda Mason 

David E. Rogers. M.D. 

Hon. J. Roy Rowland. MD. 

Hon. Louis W. Sullivan, MD. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



Press Release 
July 2, 1990 



Contact: Thomas Brandt 
202-254-5125 



COMMISSION PANEL REVIEWS EARLY INTERVENTION 
ISSUES AND BARRIERS TO SERVICES 



A working group of the National Commission on AIDS will meet in 
Dallas July 9 to continue its review of the relationship between HTV testing 
and early intervention with particular attention to the views of public health 
officials. 

On the second day of the Dallas meeting, July 10, the Commission's 
Working Group on Social/Human Issues will take testimony on the range of 
human and social services needed by people affected by the HIV/ AIDS 
epidemic with an emphasis on barriers to these services. 

Rev. Scott Allen of Dallas, a member of the National Commission who 
is chairman of the Working Group, said, "The unique dynamics of the South 
as it confronts the HIV epidemic will hopefully provide us an understanding 
of the magnitude of the obstacles along with insight into the solutions for 
early intervention strategies to work." 

The format of the Monday, July 9 session will be a facilitator-led, 
roundtable discussion among nearly 20 invited participants and 
Commissioners, along with additional time set aside for comments from 
members of the public in attendance. The meeting will take place in the 

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auditorium of Parkland Memorial Hospital, 5201 Harry Hines Boulevard, Dallas. 
(Broadcast media should contact Esther Bauer, Director of Community Relations for 
Parkland, for coverage arrangements. Phone: 214-590-8048). 

On Monday afternoon individual Commissioners, accompanied by case managers 
from the ADDS Arms Network of Dallas, will visit with persons living with AIDS. These are 
private meetings not open to the press or public. 

On Tuesday, July 10 the Working Group will follow a hearing format where more 
than 20 public health officials, care providers and educators from primarily the South and 
Southwest will present testimony and answer questions from the Commissioners. This 
session, which will also include time for comments from the public, will be held in the 
auditorium of the Dallas Public Library, 1515 Young Street at Ervay in Dallas. 

A copy of the agenda and a list of participants for both days is attached. 

Members of the National Commission on AIDS Working Group on Social/Human 
Issues are: Rev. Allen, chairman, who is a Dallas minister with extensive experience in the 
spiritual, ethical and psychological aspects of HIV disease; Harlon Dalton, who is Professor 
of Law at Yale and author of the book AIDS and the Law: A Guide for the Public; Eunice 
Diaz, M.S., M.P.H., who is an authority on AIDS among Hispanics and Assistant Professor 
of Family Medicine at the University of Southern California; Donald S. Goldman, who is 
an attorney and former President of the National Hemophilia Foundation; Larry Kessler, 
who is co-founder and Executive Director of the AIDS Action Committee in Boston; and 
Charles Konigsberg, M.D., M.P.H., who is the Director, Division of Health, Kansas 
Department of Health and the Environment. 



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130 



June Osborn, M.D., who is Chairman of the National Commission on AIDS and 
Dean of the School of Public Health of the University of Michigan, will also attend the 
Dallas meetings. 

The National Commission on AIDS is an independent body created by Congress to 
advise Congress and the President on development of "a consistent national policy 
concerning AIDS" and the HIV epidemic. 

The 15-member Commission includes five voting members appointed by the Senate, 
five appointed by the House, and two appointed by President Bush. The three non-voting 
members are the Secretary of Health and Human Services, the Secretary of Defense, and 
the Secretary of Veterans Affairs. 



# # # # 



131 



NATIONAL COMMISSION ON AIDS 

Working Group on Social/Human Issues 

AGENDA 

JULY 9-10, 1990 

Parkland Memorial Hospital 

5201 Harry Hines Boulevard 

Dallas, Texas 

Monday. July 9. 1990 

8:30 a.m. Arrive at Hospital 

Ron Anderson, M.D., President - Parkland Memorial Hospital 

9:00 a.m. Introductions 

Scott Allen, Chair - Working Group on Social/Human Issues 
June E. Osborn, M.D., Chair - National Commission on AIDS 

9:15 a.m. Roundtable Discussion 

"The Relationship of HIV Testing and Early Intervention: 
The Public Health Perspective" 

Facilitator: Nancy Love, Ph.D. 

10:45 a.m. BREAK 

11:00 a.m. Roundtable Discussion Continued 

1:30 p.m. Comments from the Public 

2:00 p.m. LUNCH 

3:00 p.m. Commissioners to Accompany Care Coordinators 

5:00 p.m. Return to Hotel 

6:00 p.m. Reception - Hosted by the AIDS ARMS Network 



132 



Tuesday. July 10. 1990 

8:30 a.m. Introduction 

Scott Allen, National Commission on AIDS 

8:45 a.m. Overview of the Social and Human Needs of People Affected by the 
HIV/ AIDS Epidemic 

Warren Buckingham, Executive Director, AIDS ARMS Network 



Examining the Range of Social and Human Services 

Needed by People Affected by the HrV/AIDS Epidemic 

with an Emphasis on the Barriers to these Services 



9:00 a.m. 



10:00 a.m. 



Eileen Carr - Dallas Urban League, Dallas, Texas 
Deliana Garcia - National Migrant Resources Project, Austin, Texas 
John Hannan - Positive AIDS in Recovery, Dallas, Texas 
Don Schmidt - Board Member, AIDS Action Council, Person Living With 
AIDS, New Mexico 



Barbara Aranda-Naranjo, R.N. - South Texas Children's AIDS Center, San 

Antonio, Texas 
Robert Dickson - Texas Commission on Alcohol and Drug Addiction, Austin, 

Texas 

Timothy Panzer - Valley AIDS Council, Harlingen, Texas 
William Waybourn - Dallas Gay Alliance, Dallas, Texas 



11:00 a.m. BREAK 
11:15 a.m. 



Donna Antoine-Perkins - HIV Services Planning Project, Mississippi State 

Department of Health 
Rebecca Lomax, M.S.W., M.P.H. - Associated Catholic Charities of New 

Orleans, Louisiana 
Janet Voorhees, M.P.H. - New Mexico HIV Services Planning Grant Director 



133 



12:15 p.m. LUNCH 
1:30 p.m. 



2:30 p.m. 



Roslyn Cropper, M.D. - Desire Narcotics and Rehabilitation Center, New 

Orleans, Louisiana 
Jean Deny, M.S.W. - Field Operations Division, Oklahoma Department of 

Human Services 

Paula Elerick Espinosa - Southwest AIDS Committee, El Paso, Texas 
Steve Hummel - Good Samaritan Project, Kansas City, Missouri 



George Buchanan, M.D. - Director, North Texas Comprehensive Hemophilia 

Center, Dallas, Texas 
Luis Fuentes - AVES (Amigos Volunteers in Education & Services), Houston, 

Texas 

Don Maison - AIDS Services of Dallas, Texas 
Henry L. Masters, III, M.D. - AIDS/STD Division, Arkansas Department of 

Health 
Ted Wisniewski, M.D. - HIV Outpatient Program, Charity Hospital, New 

Orleans, Louisiana 

3:30 p.m. BREAK 

3:45 p.m. Comments from the Public 

4:15 p.m. Summary of the Day's Proceedings by Jeff Stryker - Policy Analyst, 
National Commission on AIDS 

4:30 p.m. Working Group Business 

5:30 p.m. ADJOURN 



134 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn, MD. 

MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz. MS., MFH. 

Donald S. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, MD., MJ'.H. 

Belinda Mason 

David E. Rogers, MD. 

Hon. J. Roy Rowland, MD. 

Hon. Louis W. Sullivan, MD. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



Press Release 
July 12, 1990 



Contact: Thomas Brandt 
202-254-5125 



COMMISSION REVIEWS RECRUITMENT. TRAINING AND 
ETHICAL ISSUES FACING THE HIV/ AIDS WORK FORCE 



The National Commission on AIDS will hold hearings in Washington, 
D.C. on July 18 and 19 to review work force and personnel issues in the 
HIV/AIDS epidemic. 

The issues before the Commission will include recruitment and 
retention, education and training, and ethical issues. Specific attention will be 
paid to minority recruitment, geographic distribution, the availability and 
adequacy of specialized training for doctors, nurses, dentists, social workers 
and allied health care workers. The Commission will also review military 
health care, workplace safety and ethical issues such as duty to treat. 

June E. Osborn, M.D., Chairman of the National Commission, said, 
"The ongoing availability of well trained health care professionals is absolutely 
crucial to the nation's long term ability to deal with the epidemic. There is 
a haunting analogy between the long, silent interval before HTV causes 
recognizable disease and the long interval of training needed to 
create new, key health personnel. In each case the failure to intervene early 
promises to intensify the crisis. 

"Even at present there is a real crisis in the shortage of nurses, and a 
somewhat artificial crisis created by the worrisome number of physicians and 

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135 



dentists who try to avoid the epidemic rather than seek the continuing education needed 
to meet it square on," Dr. Osborn added. 

David E. Rogers, M.D., Vice Chairman of the Commission, said, "A serious problem 
of mounting proportion that hampers our ability to care for persons living with AIDS is a 
lack of trained professionals at all levels. What we don't have, but what we vitally need, 
is a cadre of professionals with the knowledge of how to care for persons with HIV 
infection or AIDS." 

The hearing will run from 9 a.m. to 5 p.m. on both days in hearing room B, 
Interstate Commerce Commission (ICC) Building, 12th and Constitution Ave., N.W., 
Washington, D. C. (Use Constitution Ave. entrance. Federal Triangle Metro stop). A copy 
of the agenda and a list of witnesses is enclosed. 

The National Commission on AIDS is an independent body created by Congress to 
advise Congress and the President on development of a "consistent national policy" 
concerning the HIV epidemic. 

The 15-member Commission includes five voting members appointed by the Senate, 
five appointed by the House, and two appointed by President Bush. The three non-voting 
members are the Secretary of Health and Human Services, the Secretary of Defense, and 
the Secretary of Veterans Affairs. 



# # # # 



136 



NATIONAL COMMISSION ON AIDS 

AGENDA 

JULY 18-19, 1990 

Interstate Commerce Commission 

Hearing Room B 

12th and Constitution Avenues, N.W. 

Washington, D.C. 



Wednesday. July 18. 1990 



9:00 a.m. PERSONNEL AND WORK FORCE OVERVIEW 

Eli Ginzberg, Ph.D., Director, Conservation of Human Resources, Columbia 

University 
Connie R. Curran, R.N., Ed.D., FAAN, Health Care Consultant, The Curran 

Group 
Molly Cooke, M.D., Assistant Professor of Clinical Medicine, University of 

California, San Francisco 



10:00 a.m. RECRUITMENT AND RETENTION 

Joyce V. Kelly, Ph.D., Associate Vice President for Clinical Services, 

Association of American Medical Colleges 
Caroline Bagley Burnett, Sc.D., R.N., Senior Consultant, Commission on the 

National Nursing Shortage 
Brigadier General Clara L. Adams-Ender, R.N., Chief, Army Nurse Corps 



10:45 a.m. BREAK 



11:00 a.m. Nicholas A, Rango, M.D., Director, New York AIDS Institute 

Carolyn H. Smeltzer, Ed.D., R.N., FAAN, Vice President for Nursing, 

University of Chicago Hospital 
Rene Rodriguez, M.D., President, Interamerican College of Physicians and 

Surgeons 
Floyd J. Malveaux, M.D., Ph.D., Professor of Medicine and Microbiology, 

Howard University College of Medicine; Board of Trustees, National Medical 

Association 
Charles Helms, M.D., Ph.D., Associate Dean, University of Iowa College of 

Medicine 
Caitlin Ryan, M.S.W., ACSW, Director, AIDS Policy Center, IHPP, George 

Washington University; National Association of Social Workers 

137 



12:30 p.m. EDUCATION AND TRAINING 

Harvey J. Makadon, M.D., Executive Director, Boston AIDS Constorium 
Rose Walton, Ed.D., Chair, Allied Health Resources, SUNY at Stony Brook 
Ronald L. Jerrell, President, National Association of People With AIDS 
David Henderson, M.D., Associate Director for Quality Assurance, Clinical 
Center, NIH 



1:30 p.m. LUNCH 

2:30 p.m. COMMISSION BUSINESS 

5:00 p.m. ADJOURN 

Thursday. July 19. 1990 

9:00 a.m. MINORITY RECRUITMENT AND RETENTION (H.R. 3240^ 

THE DISADVANTAGED MINORITY HEALTH IMPROVEMENT ACT 
OF 1989 

Honorable Louis Stokes, U.S. Representative, 21st District, Ohio 

9:30 a.m. FEDERAL PERSONNEL AND WORK FORCE OVERVIEW 

Fitzhugh Mullan, M.D., Director, Bureau of Health Professions, HRSA 
Marilyn H. Gaston, M.D., Director, Division of Medicine, Bureau of Health 
Professions, HRSA 

10:15 a.m. EDUCATION AND TRAINING 

Carol Raphael, CEO, Visiting Nurse Service of New York 

Raymond Scalettar, M.D., F.A.C.P., Member, Board of Trustees, American 
Medical Association 

John Molinari, Ph.D., Chair, Curriculum Advisory Committee on Blood- 
Borne Infectious Diseases, American Association of Dental Schools 

Enid A. Neidle, Ph.D., Associate Executive Director for Scientific Affairs, 
American Dental Association 



138 



11:00 a.m. BREAK 



11:15 a.m. VOLUNTEERS AND THE WORK FORCE 

Jim Graham, J.D., L.L.M., Administrator, Whitman- Walker Clinic, Inc., 

Washington, D.C. 
Laurie Sherman, Speakers Bureau Coordinator, AIDS Action Committee, 

Boston 
Eric E. Rofes, Executive Director, Shanti Project, San Francisco 



12:15 p.m. ETHICAL DILEMMAS FOR THE WORK FORCE 

Lawrence O. Gostin, J.D., Executive Director, American Society of Law and 

Medicine 
Christine Grady, R.N., M.S.N., Nurse Consultant, National Center for Nursing 

Research, NIH 
Vincent Rogers, D.D.S., M.P.H., Chair, Department of Community Dentistry, 

Temple University 
Alvin Novick, M.D., Professor of Biology, Yale University 



1:30 p.m. LUNCH 

2:30 p.m. COMMISSION BUSINESS 

5:00 p.m. ADJOURN 



139 




National Commission on Acquired Immune Deficiency Syndrome 

1 730 K Street. N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn. M.D. 

MEMBERS 

Diane Aniens 

Scon Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S.. M.P.H. 

Donald S. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsherg. M.D., M.P.H. 

Belinda Mason 

David E.Rogers, M.D. 

Hon. J. Roy Rowland. M.D. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



Press Release 
July 23, 1990 



Contact: Thomas Brandt 
202-254-5125 



COMMISSION PANEL REVIEWS SEATTLE 'PARTNERSHIP 

MODEL. BARRIERS TO CARE. DRUG PROGRAMS 

AND OTHER ISSUES 



A working group of the National Commission on AIDS will meet in 
Seattle on July 30 and 31 for local site visits at HTV care and housing 
facilities, and also to take testimony on national issues relating to the 
provision of services for persons with HIV infection or AIDS. 

On Monday, July 30 the Commission's Working Group on 
Social/Human Issues will take testimony in three areas: the barriers to the 
human and social services needed by people affected by the HIV/ AIDS 
epidemic; the successful aspects of the Seattle-King County programs and 
their community wide partnerships in care; improving or creating partnerships 
and coalitions in other areas of the country. 

Partnership in care refers to successful, cooperative program 
arrangements among local, state and federal government entities, community 
based organizations, volunteer groups, businesses, foundations and 
organizations representing specific communities heavily impacted by the HIV 
epidemic. Rev. Scott Allen of Dallas, a member of the National Commission 
who is chairman of the working group, said, "In Seattle we want to examine 

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140 



how the many public and private organizations have worked, hand in hand, to build 
partnerships that have significantly improved the quality of life, and level of service, for 
people living with HIV disease. The partnerships have created strong, flexible structures 
that can grow as we know that the demand for their services will grow." 

The working group will take testimony from 9 a.m. to 6:30 p.m. on Monday, July 30. 
The session will be held in the south conference room, fourth floor, of the Henry M. 
Jackson Federal Building, 915 Second Ave. Time has been set aside for public comment 
at 6 p.m. 

On Tuesday the working group will visit an AIDS support group, a housing program 
and a drug treatment program that are part of the region's successful partnership concept. 
However these will be small private meetings with persons living with AIDS, and will not 
be open to the news media. 

Members of the National Commission on AIDS Working Group on Social/Human 
Issues who will meet in Seattle are: Rev. Allen, chairman, who has extensive experience in 
the spiritual, ethical and psychological aspects of HIV disease; Harlon Dalton, who is 
Professor of Law at Yale and author of the book AIDS and the Law: A Guide for the Public; 
Eunice Diaz, M.S., M.P.H., who is an authority on AIDS among Hispanics and an Assistant 
Professor of Family Medicine at the University of Southern California; Donald S. Goldman, 
who is a New Jersey attorney and former President of the National Hemophilia Foundation; 
and Larry Kessler, who is co-founder and Executive Director of the AIDS Action 
Committee in Boston. 

June Osborn, M.D., who is Chairman of the National Commission on AIDS and 
Dean of the School of Public Health at the University of Michigan, will also attend the 

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141 



Seattle meeting. 

The National Commission on AIDS is an independent body created by Congress to 
advise Congress and the President on development of "a consistent national policy 
concerning AIDS" and the HIV epidemic. 

The 15-member Commission includes five voting members appointed by the Senate, 
five appointed by the House, and two appointed by President Bush. The three non-voting 
members are the Secretary of Health and Human Services, the Secretary of Defense, and 
the Secretary of Veterans Affairs. 



# # # # 



142 



NATIONAL COMMISSION ON AIDS 

Working Group on Social/Human Issues 

AGENDA 

JULY 30-31, 1990 

The Henry M. Jackson Federal Building 
915 Second Avenue 
Seattle, Washington 



Monday. July 30. 1990 



9:00 a.m. Introductions 



Scott Allen, Chair, Working Group on Social/Human Issues 
June E. Osborn, M.D., Chair, National Commission on AIDS 



Examining the Range of Social and Human Services 
Needed by People Affected by the HIV/AIDS Epidemic 



9: 15 a.m. Gail Barouh - Long Island Association for AIDS Care, Huntington, New York 
Jon Fuller, S.J., M.D. - Jesuit Urban Center, Boston, Massachusetts 
Linda Meredith - ACT UP Women's Committee, Washington, DC 
David Woodring (Osage) - National Native American AIDS Prevention 
Center 



10:00 a.m. Sean Duque - PWA, Member of the Board of Life Foundation, Honolulu, 
Hawaii 

Robert Greenwald, Esq. - AIDS Action Committee, Boston, Massachusetts 
Veneita Porter - Planned Parenthood, Alameda/San Francisco, California 
David Schulman, Esq. - AIDS/HIV Discrimination Unit, City of Los Angeles 



Partnerships in Care: Examining the Seattle-King County Model 



10:45 a.m. Lead Agency Model 

Nancy Campbell - Executive Director, Northwest AIDS Foundation 
Catlin Fullwood - Executive Director, People of Color Against AIDS Network 



143 



11:15 a.m. BREAK 



11:30 a.m. Case Management Systems 



Margo Bykonen, R.N. - AIDS Outpatient Coordinator, Swedish Hospital 

Medical Center 
Jeffrey Sakuma, M.S.W. - Coordinator, Community Health Services, Group 

Health Cooperative 



12:00 p.m. AIDS Intervention Programs for Substance Users 

Charlton Clay - Assistant Coordinator, Seattle Needle Exchange, Community 

AIDS Services Unit 

Dave Purchase - Point Defiance AIDS Project, Tacoma, Washington 
Robert Wood, M.D. - Director, AIDS Control Program, Seattle-King County 

Department of Public Health 



12:45 p.m. LUNCH 



1:45 p.m. Housing Programs 



Harris Hoffman - Project Manager, AIDS Housing of Washington 
Patricia Mclnturff, M.P.A. - Director, Regional Division, Seattle-King County 
Department of Public Health 



Partnerships in Care: Improving and Creating Partnerships 
in the Delivery of Social and Human Services 



2:15 p.m. Rene Durazzo - San Francisco AIDS Foundation, California 
Randall Gorbette - Phoenix Shanti Group, Phoenix, Arizona 
Ronald Johnson - Minority Task Force on AIDS, New York City 
John Pacheco - Minnesota Hispanic AIDS Partnership, St. Paul, Minnesota 
Lorraine Teel - Minnesota AIDS Project, Minneapolis 



3:15 p.m. BREAK 



3:30 p.m. Maribel Clements, R.N., M.A. - Hemophilia Program, Puget Sound Blood 
Center 

Deborah Lee - Association of Asian Pacific Community Health Organizations, 
Oakland, California 

144 



Cliff Morrison, R.N. - Robert Wood Johnson Foundation, AIDS Health 
Services Program, University of California, San Francisco 
Elizabeth Valdez, M.D. - Concilio Latino de Salud, Phoenix, Arizona 



Responsibilities and Roles of Government Agencies 
in the Development of Social and Human Services Networks 



4:30 p.m. Kristine M. Gebbie, R.N. - Washington Department of Health 
King Holmes, M.D. - University of Washington 
Adam Myers, M.D. - Denver Department of Health and Hopsitals, Denver, 

Colorado 
Joseph O'Neill, M.D., M.P.H. - Bureau of Health Care Delivery and 

Assistance, Division of Special Populations, Health Resources and Services 

Administration 



5:30 p.m. Comments from the Public 
6:00 p.m. ADJOURN 



Tuesday. July 31. 1990 

9:00 a.m. Commission Working Group Business 

11:30 a.m. Commission Site Visits and Meetings with Persons Living With AIDS 



145 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 fFAX] 254-3060 



CHAIRMAN 

June E. Osborn. M.D. 

MEMBERS 

Diane Ahrens 

Scon Allen 

Hon. Dick Cheney 

Harton L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S., M.P.H. 

Donald S. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, M.D. 

Hon. Louis W. Sullivan, M.D. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



Press Release 
August 8, 1990 



Contact: Thomas Brandt 
202-254-5125 



COMMISSION REVIEWS HIV INFECTION ISSUES 
IN CORRECTIONAL FACILITIES 



The National Commission on AIDS will tour New York prison and jail 
sites, followed by a full day of formal hearings in Manhattan, as part of its 
review of HIV infection issues in the nation's correctional facilities. 

On Thursday, August 16 the Commission will tour Rikers Island 
Correctional Facility, which is a New York City jail, and the Fishkill 
Correctional Facility, which is a New York state prison. Rikers only will be 
open to the press. 

The hearings will be held Friday, August 17, in room 342 at 5 Perm 
Plaza, Manhattan. Witnesses will include officials from the Federal Bureau 
of Prisons, the National Prison Project of the ACLU, authorities on 
correctional issues from Alabama, California, New Jersey, Pennsylvania, New 
York and other states, the Centers for Disease Control, the National 
Women's Law Center and other organizations. A copy of the agenda for both 
days is attached. 

June Osborn, M.D., Chairman of the National Commission, said, "The 
convergence of the twin epidemics of HIV infection and illicit drug use make 
prisons a particularly sensitive setting. On the one hand they can serve as an 

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146 



exceptionally good place for HIV education for prevention, and at the other extreme they 
can focus the worst societal forces such as discrimination and lack of access to health care." 

Dr. Osborn also said, "There is a long standing argument about the ethics of doing 
clinical research in captive populations. And yet since much of AIDS therapy is 
experimental, that raises perplexing issues of appropriate opportunity to participate in 
available therapeutic options." 

Harlon Dalton, a member of the Commission and a Yale law professor, said, "Often 
prison officials are reluctant to acknowledge that sex and drug use occur behind prison bars, 
which makes it extremely difficult to design programs to promote safer behaviors." 

Mr. Dalton, who is also editor of AIDS and the Law: A Guide for the Public, added, 
"Problems of the outside are magnified in prison, particularly the challenge of providing 
quality health care, and the problem of insuring confidentiality." 

Other issues before the Commission will include the epidemiology of HIV in 
correctional facilities, prisoners' access to health care, HIV segregation, the ethics and 
history of medical experimentation on prisoners, and family issues. 

The National Commission on AIDS is an independent body created by Congress to 
advise Congress and the President on development of a "consistent national policy" 
concerning the HIV epidemic. 

The 15-member commission includes five voting members appointed by the 
Senate, five appointed by the House, and two appointed by President Bush. The three non- 
voting members are the Secretary of Health and Human Services, the Secretary of Defense, 
and the Secretary of Veterans Affairs. 

# # # # 

147 



NATIONAL COMMISSION ON AIDS 

SITE VISITS 

AUGUST 16, 1990 



8:00 a.m. Rikers Island Correctional Facility 



Briefing and Tour: 

Charles A. Braslow, M.D. 

Project Director 

Montefiore Rikers Island Health Services 

Leslie Keenan 

Associate Commissioner 

New York City Department of Corrections 



2:00 p.m. Fishkill Correctional Facility 



Briefing and Tour: 

Robert B. Greifinger, M.D. 

Deputy Commissioner 

Chief Medical Officer 

State of New York 

Department of Correctional Services 



148 



NATIONAL COMMISSION ON AIDS 

AGENDA 

AUGUST 17, 1990 

5 Penn Plaza 

8th Avenue 

33rd & 34th Streets 

Room 342 
New York, New York 



9:00 a.m. Welcome 



June E. Osbora, M.D. 
Chairman 

An Introduction to Corrections 

Mark Lopez, Esq. 

Staff Attorney 

National Prison Project of the ACLU Foundation 



Epidemiological Perspective 

Kenneth G. Castro, M.D. 

Special Assistant to the Director for Science 

Division of HIV/AIDS 

Centers for Disease Control 



9:30 a.m. Health Care in the Correctional Setting 

Robert Cohen, M.D. 
Inpatient AIDS Services 
St. Vincent Hospital 



9:50 a.m. Federal System 

Kenneth P. Moritsugu M.D., M.P.H. 
Assistant Surgeon General 
Medical Director 
Federal Bureau of Prisons 

10:15 a.m. BREAK 



149 



10:30 a.m. Issues in Correction: State Experiences 

Alabama 

Alexa Freeman, Esq. 

Staff Attorney 

National Prison Project of the ACLU Foundation 

California 

German V. Maisonet, M.D. 

Chief, HIV Services 

California Medical Facility -- Vacaville 

New Jersey 

Catherine Hanssens, Esq. 

State of New Jersey Department of the Public Advocate 

Office of Inmate Advocacy 

New York 

Michael Wiseman, Esq. 

Staff Attorney 

Prisoners Rights Project of the Legal Aid Society 



11:30 a.m. Women and HIV Infection 

Brenda Smith, Esq. 

National Women's Law Center 



Marilyn Rivera 

Founding Member ACE Program 

Bedford Hills Correctional Facility 



12:00 p.m. LUNCH 



1:30 p.m. Presentation of Inmate Statements and Affidavits 

Judy Greenspan 

AIDS Information Coordinator 

National Prison Project of the ACLU Foundation 



150 



1:45 p.m. Inmate Access to Clinical Trials 

Robert J. Levine, M.D. 

Professor of Medicine 

Yale University School of Medicine 

Victoria Sharp, M.D. 
Medical Director 
Spellman Center 
St. Clairs Hospital 

Ann Graham, C.R.N.A., M.P.H. 

Executive Director 

Research Involving Human Subjects Committee 

Federal Drug Administration 

A. Billy S. Jones 
Macro Systems Inc. 



2:30 p.m. HIV/AIDS Education 

Lewis Tanner Moore, M. Ed. 
HIV/AIDS Educator 
Philadelphia Prison AIDS Project 

Sharon A. Letts 
Deputy Director 
Delaware Council on Crime and Justice 

Edward A. Harrison 
Director of Planning 
National Commission on Correctional Health Care 

Jose C. Hernandez, Jr. 
Executive Director 
Project HACER 



3:30 p.m. BREAK 



3:45 p.m. Courts. Inmates and HIV/ AIDS Policy Making through Litigation 

Honorable Richard T. Andrias 

Justice of the New York State Supreme Court 



151 



Scott Burris, Esq. 

Staff Attorney 

AIDS and Civil Liberties Project 

ACLU of Pennsylvania 

J. L. Pottenger, Jr., Esq. 

Clinical Professor of Law 

Jerome N. Frank Legal Services Organization 

Yale Law School 



4:30 p.m. HIV/AIDS and Release Policies 

Cathy Potler, Esq. 

Director, AIDS in Prison Project 

Correctional Association of New York 

Romeo Sanchez 
Supervisor of Advocacy Issues 
City Commission on Human Rights 
AIDS Discrimination Division 



5:15 p.m. Public Comment 

5:30 p.m. ADJOURN 



152 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn. M.D. 

MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz, M.S., M.P.H. 

DonaldS. Goldman, Esq. 

Don C. DesJarlais, Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, MD. 

Hon. Louis W. Sullivan, MD. 

EXECUTIVE DIRECTOR 

Maureen Byrnes 



Press Release 
August 21, 1990 



Contact: Thomas Brandt 

202-254-5125 



COMMISSION REPORTS ON PROBLEMS IN AIDS CLINICAL 

RESEARCH PROGRAM: THE HIDDEN EPIDEMIC IN RURAL AMERICA: 

AND THE HEALTH CARE WORKER CRISIS 



The National Commission on AIDS today released a report to President 
Bush and Congress that cites serious problems in three major areas of the 
HTV epidemic including the AIDS clinical trial program, rural America, and 
the nation's health care work force. 

In research, the Commission found that too few people of color, 
women and children are included in clinical trials; that research has expanded 
too slowly on the management of opportunistic infections even though they 
are usually the cause of death for people with AIDS; and that federal officials 
need to respond to the perception of possible conflict of interest, and the call 
for full disclosure of pharmaceutical company consulting relationships, by 
researchers who also advise the National Institutes of Health on AIDS 
matters. 

In rural America, the Commission found a volatile mix of 
discrimination, lack of knowledge and education about HIV infection, and 
minimal health care systems unable to serve their community's even basic 
needs, let alone the increase in HIV infection. The Commission is alarmed 
that many rural areas and small towns are currently unable, and often 

-more- 



153 



unaware, of their need to deal with the three epidemics of HIV infection, drug addiction 
and sexually transmitted diseases. 

The Commission's third issue is concern over the crisis shortage of health care 
providers willing to care for people living with HIV infection and AIDS. The Commission 
found that among health care workers, many refuse to treat people with HIV or AIDS out 
of fear of infection on the job, others claim lack of training, and some simply discriminate 
against people with HIV infection or AIDS. "The Commission's findings should give all of 
us - the White House, Congress and the American people ~ a sense of urgency," said Dr. 
June Osborn, Chairman of the National Commission on AIDS. 

"Many infected people aren't getting the care and access to clinical trials at the levels 
they need; many parts of rural America are about to be blind sided by the epidemic; and 
perhaps least excusable, many health care workers still refuse to fulfill their obligations to 
the sick if the disease is HIV," she added. 

"These issues are at the cutting edge of the epidemic which is certain to become 
much worse in the 1990s than the 1980s, even if we were somehow able to stop all further 
infections tomorrow," Dr. Osborn said. 

The Commission's report includes the following six recommendations: 



1. A comprehensive community-based primary health care system, supported by 
adequate funding and reimbursement rates, is essential for the care and treatment 
of all people, including people living with HIV infection and AIDS. The 
Commission highlighted this need in its first report and continues to believe that lack 
of access to primary care services provided by adequately trained primary care 
providers is undermining current efforts in HIV/ AIDS research, prevention and 
treatment. The development of a comprehensive system with linkages to research 
protocols, existing community-based services, hospitals, drug treatment programs, 
local health departments, and longterm care facilities, based on a foundation of 
adequate support, is long overdue and should be a top priority for the federal 
government. 

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154 



2. AIDS education and outreach services in rural communities should be expanded and 
designed to provide clear and direct messages about how HIV is and is not 
transmitted, and the kinds of behaviors that may place an individual at risk for HIV 
and other sexually transmitted diseases. Expansion of programs, resources and 
health care providers is also needed to respond to rural America's need for 
prevention and treatment programs that address the three epidemics of HIV 
infection, drug addiction and sexually transmitted diseases. 

3. The NIH clinical trials program is in serious trouble. The limited number of 
enrollees in trials and the lack of demographic and geographic diversity of the 
participants threatens the success of the program and denies many people living with 
HTV infection and AIDS the opportunity to participate in experimental drug 
therapies. The academic health centers involved have not been as vigorous as one 
would hope in advancing these trials, nor has the NIH been vigorous in monitoring 
their performance. Aggressive efforts must be made to overcome the obstacles to 
participation for many who are under-represented. Success in this area can only be 
measured by increased participation in trials. 

4. There is a desperate need for more research on the management of opportunistic 
infections, usually the cause of death for people with AIDS. The NIH simply must 
expand the level of research in this area. This expansion must not come at the 
expense of other research efforts and should be an integral part of a comprehensive 
AIDS research plan. This plan should outline the AIDS research priorities and goals 
for the entire NIH, and the resources needed to achieve them. The plan should be 
widely disseminated and should incorporate the views of persons living with HIV 
infection and AIDS. 

5. There is a shortage of crisis proportions of health care providers capable and willing 
to care for people living with HIV infection and AIDS. This crisis will only get 
worse as the HIV epidemic continues into the 1990's. Action must be taken now to 
increase and improve the effectiveness of all programs designed to educate and 
retain practicing health care professionals, and to create incentives for providers to 
care for people in underserved areas. Existing programs such as the National Health 
Service Corps should be expanded. New programs such as those outlined in the 
Disadvantaged Minority Health Improvement Act (H.R. 3240) should be created. 
And, specific HIV/ AIDS fellowships and training programs should be 
established and supported to prevent a crisis of greater magnitude. 

6. Volunteers should be publicly recognized not only for the invaluable contribution 
they have made to people living with HIV infection and AIDS, but also for the way 
in which they fight fear and bigotry by fostering compassion and caring. The cost 
effective dollars needed to recruit, train, support and manage volunteers must be 
provided by the government and the private sector, and recognized as essential to 
our national response to the HIV epidemic. 



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155 



The report released today to the President and Congress is the third interim report 
from the National Commission. The first, released Dec. 6, 1989, dealt with the failures of 
the health care delivery system to deal with HIV, among other issues. The second report, 
released on April 24, 1990, called for several actions including new federal leadership for 
the epidemic and additional funds targeted for cities and states that are most heavily 
impacted by the epidemic. 

The National Commission on AIDS is an independent body created by Congress to 
advise the Congress and the President on development of "a national consensus on policy" 
concerning the HIV epidemic. 

The Commission took office on August 3, 1989 and since then has held nearly 30 
days of hearings, working group meetings and site visits in various regions of the country. 
In addition the Commission has consulted with dozens of experts and conducted extensive 
staff research and review of major issues in the AIDS epidemic. 

The 15-member Commission includes five voting members appointed by the Senate, 
five appointed by the House, and two appointed by President Bush. The three non-voting 
members are the Secretary of Health and Human Services, the Secretary of Defense and 
the Secretary of Veterans Affairs. 



# # # # 



156 




National Commission on Acquired Immune Deficiency Syndrome 

1730 K Street, N.W., Suite 815 

Washington, D.C. 20006 

(202) 254-5 1 25 [FAX] 254-3060 



CHAIRMAN 

June E. Osborn. M.D. 



August 21, 1990 



President George Bush 
The White House 
Washington, D.C. 20500 

Dear Mr. President: 



MEMBERS 

Diane Ahrens 

Scott Allen 

Hon. Dick Cheney 

Harlon L. Dalton, Esq. 

Hon. Edward J. Derwinski 

Eunice Diaz. M.S.. M.P.H. 

DonaldS. Goldman, Esq. 

Don C. DesJarlais. Ph. D. 

Larry Kessler 

Charles Konigsberg, M.D., M.P.H. 

Belinda Mason 

David E. Rogers, M.D. 

Hon. J. Roy Rowland, M.D. 

Hon. Louis W. Sullivan, M.D. 



Since our last report to you, the National Commission on AIDS has 
traveled to rural Georgia to better understand the impact of the HTV 
epidemic in rural communities across the country. Two formal hearings have 
examined the current status of HTV research and drug development and 
looked at the mounting hardships which shortages in health care personnel 
are imposing on people with HTV infection and AIDS. A working group of 
the Commission also met with public health officials and others from the 
Southwest region of the country in Dallas and heard poignant testimony 
about the lack of many basic publicly supported services needed by people 
affected by the HIV epidemic. The enclosed report highlights the National 
Commission's most recent findings. Again it contains a short series of 
recommendations for swift action. 



Sincerely, 

Aune E. Osborn, M.D. 
Chairman 



David E. Rogers, MID. 
Vice Chairman 



EXECUTIVE DIRECTOR 

Maureen Byrnes 



cc: The Honorable Robert C. Byrd 

President Pro Tempore of the Senate 

The Honorable George J. Mitchell 
Majority Leader of the Senate 

The Honorable Bob Dole 
Minority Leader of the Senate 

The Honorable Thomas S. Foley 
Speaker of the House of Representatives 

The Honorable Richard A. Gephardt 

Majority Leader of the House of Representatives 

The Honorable Robert H. Michel 

Minority Leader of the House of Representatives 



157 



National Commission 
on 
Acquired Immune Deficiency Syndrome 

Report Number Three 
AIDS IN RURAL AMERICA 

Overview 

The number of new AIDS cases diagnosed in rural communities across the country is 
growing at an alarming rate. Although the epidemic continues to be most severe in urban 
areas, there has been a 37 percent increase in diagnosed AIDS cases in rural areas 
compared to a 5 percent increase in metropolitan areas with populations of over 500,000 
in just a one year period. In Georgia the number of AIDS cases has tripled in the past two 
years. For the first time, the spread of disease in rural Georgia and small cities has 
equalled the growth of HIV infection in metropolitan Atlanta. 

This is happening all across the country. The Commission was told of alarming rates 
of increase in HIV infection in Arkansas, Mississippi and rural communities in Texas. It 
is happening tragically and secretly without adequate health care services or human support 
in these rural areas. 



Findings 



In rural America, there is an epidemic of fear and bigotry, fanned by the absence 
of education and knowledge, surrounding HIV infection and AIDS. Like much of 
urban America, rural communities are just beginning to confront the realities of 
HrV infection and AIDS. The fear of being "found out," we were told, is almost as 
great as the fear of the disease itself. As one Commission member, Belinda Mason, 
noted, "I have seen rural America at its warm, supportive best and at its close- 
minded, bigoted worst." 

In one community we learned of a young man who sneaks out to his mother's car 
at night, covers himself with a blanket and waits for his mother to come out at dawn 
to drive him many miles to another county where he can receive treatment 
anonymously. When he returns home he remains in the car covered by the blanket 
until sundown when he creeps back into his mother's trailer home. All this, to 
prevent others from knowing that his mother is housing and caring for a son who 
has AIDS. Little will be known of his life - only that he died of AIDS. 

One man told us of being "thrown out of my church and told not to come back." A 
local doctor told us, "We've had people lose their jobs and get kicked out of their 



158 



apartments." Another told us, "President Bush talks about those thousand points 
of light, but whenever people hear that I have HIV, the lights go out and I am in the 
dark." 

In Texas we were told that the isolation and stigmatization of people with AIDS in 
rural areas is similarly severe. "Even a family is apt to reject the patient because of 
fear that the neighborhood or community will respond hatefully." 

AIDS education is virtually non-existent and desperately needed in rural 
communities. This includes even the simplest of education about HIV infection for 
health care providers. Ignorance and misinformation are seriously hampering if not 
crippling efforts to treat those who are sick; clearly contributing to the rapid increase 
in rates of HIV infection in rural America; and contributing greatly to the 
discrimination against and ostracism of people living with HIV infection and AIDS. 

Drug education, prevention, and treatment programs range from grossly inadequate 
to non-existent. If there is to be any hope of stemming the tide of what one health 
official described as "three epidemics - AIDS, drugs and STD (sexually transmitted 
diseases)" - services for all of these disease problems and educational programs 
designed to contain them must be dramatically expanded. 

One infectious disease specialist from Macon, Georgia expressed great concern about 
the spread of AIDS into families, noting that he was currently seeing five families 
in which both parents are infected with HIV. The growth in the number of 
heterosexual cases of AIDS, in rural communities, particularly among women, (many 
in their teens), is often attributed to the combination of crack cocaine, trading sex 
with multiple partners for drugs or money, and rising rates of syphilitic infections 
which seem to increase transmission of HIV infection. In the last five years, the 
number of new cases of syphilis has increased tenfold in Southeast Georgia. 

The singular lack of access to primary health care services in rural America was 
shocking and heartrending. The Commission's firsthand look at rural communities 
made graphic and personal reports of "a rural health care crisis evidenced by rising 
rural maternal and infant mortality rates, lower health status of rural Americans 
compared to those living in cities, [and] a greater proportion of rural Americans 
lacking any health insurance" (Senate Report 101-127). AIDS is dramatically 
accentuating the problem. 

In Macon, Georgia, the Commission visited the Bibb County HIV Ambulatory Clinic 
where health care providers were virtually overwhelmed with the increasing number 
of people with HIV infection and AIDS needing treatment and support services. 
As the need for services increases, the dollars decrease. The Bibb County HIV 
Ambulatory Clinic, operated by the Bibb County Health Department, receives no 
direct financial assistance whatsoever from the federal government. Given the rising 
demand for services, this can no longer continue. Federal assistance is essential for 
this clinic and other similar clinics who are serving the growing numbers of people 
living with HIV infection and AIDS. 



159 



HIV RESEARCH AND DRUG DEVELOPMENT 

Overview 

On May 7 and 8, the Commission convened hearings to review the current status of 
HIV-related biomedical research efforts and the status of new clinical drug trials. 
Representatives from the National Institutes of Health (NIH), Institute of Medicine, ACT 
UP, the American Foundation for AIDS Research, Project Inform, American Association 
of Physicians for Human Rights, and others were invited to report to the Commission on 
their ongoing efforts to support and monitor private and public HIV-related research 
efforts. The Commission will continue to rely on these organizations, with expertise to 
carefully examine many complex scientific issues, to keep us apprised of research efforts and 
findings. 

While the investment of public and private funds into HIV-related research is 
impressive, and the fundamental biomedical knowledge about HIV infection acquired over 
a very short time remarkable, the transfer of knowledge and treatment to those who are 
HTV infected falls far short of the mark. To put it bluntly, the number of people involved 
in clinical trials (12,000) versus the number of people eligible for clinical trials is pitifully 
small. The ground rules for trials seem often too rigid to permit many (such as drug users) 
from being included. People of color, women, and children are grossly under-represented 
in federally financed trials. This limits access to experimental therapies as well as basic 
health care services many receive only through participation in trials. Communication 
between researchers, people living with HIV infection and AIDS, and the public is not 
being done well, accentuating all the problems noted above. Much of the blame for many 
of these problems rests with academic health centers. These centers and the federal 
government must do better. A clear, crisp, well articulated clinical research strategy is 
simply not in evidence. 

Also grossly apparent is that many people seeking access to experimental therapies are 
simply not getting basic health care services for HIV-infection and AIDS. Clinical trials 
cannot exist or be productive in a health care vacuum. They must be part of a 
comprehensive health care system which ensures adequate access and reimbursement for 
all kinds of care needed, including experimental therapies for HIV-infection and AIDS. 



Findings 



Opportunistic infections are usually the cause of death for people with AIDS, yet 
the NIH has been slow in expanding its AIDS-related research activities to include 
research on drugs to manage opportunistic infections. The Commission agrees with 
all those who have called for a greater priority to be given to research related to 
these infections without slackening research on drugs to treat HIV infection and 
AIDS. Clearly, both are vitally needed and the dollars to ensure both are essential. 

Severe criticism was repeatedly expressed about the lack of results from the sizable 
investment (to date, approximately $428 million) in the AIDS Clinical Trials Group 
Program (ACTG). It was pointed out that the majority of FDA approved drugs for 
AIDS and AIDS-related opportunistic infections have all been developed outside the 

160 



ACTG program. 

Heated criticism about the limited number of participants in ACTG trials continues. 
Barriers contributing to the low level of participation in clinical trials, in addition to 
those already mentioned, include lack of adequate transportation, day care needs, 
exclusion of persons with hemophilia, and lack of access to basic medical services 
and clinical trial information. These barriers all demand aggressive attention and 
solutions, not more discussion. 

People of color are grossly under-represented in clinical trials. Approximately forty- 
three percent of all AIDS cases are seen in men and women of color. Yet only 
approximately 23 percent of the participants in clinical trials are men and women of 
color. 

The Commission was told that this under-representation was of concern to the 
NIAID and that efforts were underway to increase minority participation in clinical 
trials. The Commission strongly supports these efforts and believes these efforts 
should be swift and carefully monitored to assure their success, with the results 
promptly reported to the public. 

Women, particularly women of color, have traditionally experienced difficulty 
qualifying for clinical trials. One witness told the Commission she has attempted to 
qualify for a research protocol for two years. "In this country," she said, "women 
have been secondary to men with AIDS, and most recently are secondary to babies." 

According to the Chief of Perinatology at Harlem Hospital, "This historical precedent 
for excluding women of childbearing age from treatment trials can no longer be 
allowed. On the other hand, including women, especially pregnant women, only 
for the sake of improving the outcome of the child, is also intolerable. Women have 
a right to be included simply because they are infected and are dying. No other 
reason is needed." The Commission emphatically agrees. 

For a parent whose child is diagnosed with AIDS and whose only hope lies in the 
child's participation in an AIDS-related clinical trial, the exclusion of children from 
trials certainly highlights one of the gross inequities in our research programs. Since 
the early days of the epidemic, parents have been demanding that children be 
included in AIDS-related clinical trials and that parents and patient advocates be 
included in decisions about the care of their child. 

Traditionally, children have been denied access to experimental drugs because of the 
unresolved ethical dilemma of whether or not to include children in trials. In fact, 
the Director of Pediatric AIDS Research at the National Cancer Institute told the 
Commission how efforts to increase participation of children in clinical trials were 
hampered by the lack of a national consensus on this major ethical question. 
Clearly, science has moved forward to where the inclusion of children in 
experimental therapies is essential. 

The location of clinical trial sites and the availability of affordable transportation to 
them are crucial factors in making clinical trials accessible to children. We heard 



161 



from one mother who traveled from Florida, to North Carolina and finally to 
Maryland before she could get her daughter into a clinical trial. We were also told 
that unless transportation is available and affordable it can be impossible for many 
people to travel even 45 minutes away from home. These are problems we can 
address and must address quickly. 

The Commission believes the NIH Community Program for Clinical Research on 
AIDS (CPCRA) is an imaginative and positive step. Because of a different 
philosophy and an aggressive grassroots impetus, these trials should help include 
people of color, women, intravenous drug users, children and other under- 
represented communities in clinical trials. The Commission heard testimony from 
three physicians participating in the CPCRA program. All testified that the program 
would enable greater participation of people in trials at the places where they receive 
primary health care. "Clinical trials conducted in the primary care setting," according 
to one physician, "have access to large numbers of patients and are likely to fill 
quickly and finish as rapidly as possible." We also heard testimony from the National 
Hemophilia Foundation (NHF) about an ACTG-without-walls concept that 
demonstrates community programs do not sacrifice scientific value and integrity. The 
Commission strongly encourages continuation and expansion of the CPCRA program 
in parallel with the steps necessary to strengthen the ACTG's. 

Complaints were expressed about delays in the publication of clinical trial 
information. One witness urged all agencies sponsoring clinical trials in HIV/ AIDS 
"to be more accountable to an anxious public, and that they actively and 
expeditiously release specific data concerning the results of their clinical trials." 

One impression needs swift settlement. We were told that there currently exists a 
perception of conflict of interest for some investigators who play an advisory role 
with the NIH in setting national AIDS research priorities. One witness called on the 
Secretary of Health and Human Services "to mandate the full disclosure of all 
consulting relationships these investigators maintain with pharmaceutical companies." 
This deserves a prompt response from the Department of Health and Human 
Services. 



Summary 



As is apparent, the Commission is worried about the status of clinical treatment 
trials. We are vividly aware of the enormous challenge confronting all scientists in 
developing new drugs and therapies for HIV and opportunistic infections. The 
obstacles are many and the successes, still sadly enough, are all too few. But the 
hope for thousands of people still rests with our clinical trial programs. Clearly these 
must be made more encompassing, more readily accessible to all, easy to find, well 
managed and well coordinated. There are many problems which need attention. 
We know they are being addressed but we can and must do better, swiftly and 
visibly. 



162 



PERSONNEL AND WORKFORCE 

Overview 

On July 18 and 19, the Commission convened a hearing to examine the personnel 
shortages which are hampering our response to the HIV epidemic. Physicians, nurses, 
dentists, social workers, allied health workers, volunteers, and representatives from the 
federal government and professional organizations presented the Commission with a picture 
of a national health care workforce confronted with increasing demands and decreasing 
support and re-enforcements. We were also reminded that unrealistically low health care 
reimbursement rates, especially rates for outpatient services, continue to serve as 
institutional disincentives for many health care providers to care for people with HIV 
infection and AIDS. 



Findings 

DENTISTS 



While there does not appear to be a national shortage of dentists, we heard 
repeatedly about a serious shortage of dentists willing to treat people with HIV 
infection and AIDS. We were told that since the early days of the epidemic many 
dentists did not treat people with AIDS because they were afraid and because they 
felt dentists had a traditional right to choose their own patients and refuse to see 
those who were suspected of or who openly admitted to being infected. "Happily," 
we were told by the American Dental Association, "not all dentists chose this avenue 
of escape, and the avenue has been closing as understanding of the disease has 
grown, as courts have declared this kind of behavior unacceptable, as dentists have 
become more comfortable with the disease and as their sense of moral and 
professional responsibility has replaced their initial fears." 

While the Commission believes more dentists are willing to treat people with HIV 
infection and AIDS than in the early days of the epidemic, the number remains 
grossly inadequate and unacceptable. The difficulty, and in many cases complete 
inability, of obtaining dental services is still an all too common problem for people 
living with HTV infection and AIDS. One witness told us of only two dentists in his 
community who would accept Medicaid, neither of whom would see him due to his 
HIV infection. One dentist's excuse was that his office was carpeted and he would 
not be able to sterilize the room after the visit. The other dentist said she had 
plants and could not take the risk of him infecting her plants and her plants then 
infecting her other patients. That particular witness did find an oral surgeon who 
was willing to see him, but only if he would come after hours, come in the back 
door, and not tell anyone he had been there. 

As one Commissioner put it, "Whether it is in rural communties or big cities, when 



163 



it comes to dentists, I just keep hearing people with HIV infection and AIDS saying, 
'I can't get help.'" 

NURSES 

The current nursing shortage continues to be of crisis proportions. The Commission 
heard testimony from experts who have studied the overall nursing shortage. It is 
clear to us the shortage promises to get worse in the future unless it is addressed 
now. We were told the Department of Health and Human Services and Department 
of Labor are predicting that the need for Registered Nurses will increase by 60 
percent in the next 10 years. And, contrary to popular opinion, there is no untapped 
resource of trained nurses. One witness told us that only 4 percent of licensed 
Registered Nurses are working outside of nursing. 

While efforts are underway to address the overall nursing shortage, special efforts 
are needed to better understand and address how the shortage is compounded by the 
HTV epidemic. Misinformation and fear about caring for people with HIV infection 
and AIDS and the considerable emotional strain that often comes with caring for 
people with HIV infection and AIDS are issues which must be confronted if we are 
to prevent nurses from avoiding the field. 

PHYSICIANS 

A shocking number of physicians are reluctant to take care of people living with HIV 
infection and AIDS. The New York Times recently reported that "with an estimated 
200,000 people infected with the virus, New York City has more AIDS cases than 
any other city in the world. Still, the city's Health Department records show that 78 
percent of local physicians and dentists have never done a single AIDS test. 
Although the city has about 25,000 physicians, the Gay Men's Health Crisis, the 
largest volunteer AIDS agency, has a referral list of just 45 qualified private AIDS 
specialists in Manhattan who are willing to take patients. There are only one or two 
for each of the city's other four boroughs which have half of the city's cases." 
Nationally, the Physicians Association for AIDS Care has a referral list of only 2,000 
physicians, a tiny fraction of the country's total of 600,000. 

One witness told us of a recent study that estimated only "10 percent of internal 
medicine residents have a strong commitment to the care of HIV infected people 
and are likely to include them in their post-training practice. About 25 to 30 percent 
have a definite aversion to HrV work and are planning their professional lives to 
avoid contact with these patients. The remaining 65 percent are neutral or 
uncommitted in their stance towards the AIDS epidemic." 

Unwillingness or reluctance to care for people with HIV infection and AIDS is often 
attributed to fear of occupational risk and lack of adequate training and expertise 
in treating HIV infection and AIDS. The Commission believes both of these 
concerns should be acknowledged and addressed. Support at every institutional level 
is needed for education about occupational risks, training in the use of universal 
precautions, and the provision of adequate equipment. Support is also needed to 
develop a comprehensive HIV/ AIDS educational strategy that effectively meets the 

164 



needs of all physicians, particularly primary care physicians. After all, as one witness 
reminded us, if you consider that we have one million or more cases of persons 
infected with HIV across the country, it can no longer be acceptable for a physician 
or dentist to offer as an excuse, "I don't have expertise in relation to this particular 
disease." They simply must acquire the expertise. 

Finally, we were told that "physicians who do not intend to work with HIV infected 
patients are characterized by negative attitudes toward people from predominant 
HTV risk groups, dislike working with an incurable disease which produces 
progressive loss of function and decreasing dependency, and a weak sense of 
professional responsibility." These findings certainly have important implications as 
we attempt to increase the willingness of physicians to work with people with HIV 
infection and AIDS, and to ensure access to care. 

SOCIAL WORKERS 

Many people living with HTV infection and AIDS have relied on social workers for 
much of their care. Social workers have developed many of the early models of 
AIDS services and community care and provided all levels of service for patients 
and families. The number of social workers across the country (500,000 in total) falls 
far short of the growing need. Social workers have long gone unsupported and 
unrewarded. It is time that changed. 

ALLIED HEALTH 

Clearly, physicians, nurses, dentists, and social workers are not the only care 
providers in the HIV epidemic. Indeed, allied health workers do much of the hands- 
on care provided to people with HIV infection and AIDS. One witness pointed 
out there are 85 allied health professions, representing one-to two-thirds of the entire 
health workforce. These professionals are the hundreds of thousands across the 
country who draw blood, process HIV antibody tests, provide respiratory therapy, 
physical therapy, nutritional therapy and countless other health care services so many 
qf us take for granted. There is a shortage of allied health professionals and, we 
\\tere told, the shortage will be greater than the current physician and nursing 
shortage. 

\ 
PUBLIC HEALTH 

The Commission also recognizes that there is an increasing need for public health 
specialists such as epidemiologists and biostatisticians. Nurses, physicians, dentists 
and others trained specifically in public health and often serving in community 
settings need support and re-enforcement. Schools of public health must expand and 
enrich HIV/ AIDS specific programs in their curricula and training opportunities. 

VOLUNTEERS 

Volunteers are now and always have been at the heart of otr response to the 
HTV/ AIDS epidemic. They provide many of the services traditionally provided by 
paid professionals. "It is the volunteers," we were told, "who do the job, and most 

165 



important in some ways it is the volunteers who save all of us millions of dollars 
every single year in this epidemic." 

But all too often volunteers are viewed as a free resource, when in fact volunteers 
require financial and management support for recruitment, training and coordination. 
The cost effective dollars to train and support one of our most valuable resources 
in the HIV/ AIDS epidemic simply must be given priority in government grants and 
agency operating budgets. In addition, one witness told us, something as simple and 
inexpensive as the President inviting AIDS volunteers to the White House would not 
only honor AIDS volunteers but would also send the message that our country is still 
in the midst of an HIV/ AIDS epidemic and volunteers are key to the country's 
response. 



Summary 



Finally, the Commission heard from experts about the ethical dilemmas confronting 
health care workers in the HIV/ AIDS epidemic. Concerns about occupational risk, 
duty to treat, the right to know a patient's HIV antibody status, emotional stress and 
strain, and assisting patients to make treatment decisions were all raised as difficult, 
sensitive issues that we must begin to confront and to assist health care workers to 
resolve. Caring for people with HIV infection and AIDS will challenge health care 
providers to overcome their fears, ignorance and prejudices. For many this will not 
be easy. But, as one witness reminded us, "We have taken on difficult tasks before." 
What we must do, he said, "is teach people a set of skills that we have largely 
ignored: how to relate to patients, how to understand their frame of reference.... We 
are defined by our patients and by the depth and breadth of care that we provide 
for them...we must encompass that when we become a professional." 

It is clear to the Commission that effective AIDS education programs are needed for 
all health care workers. This includes those who are currently practicing, as well as 
those in training. We must support and re-enforce those who have chosen to provide 
the care and services needed over the last decade to people living with HIV infection 
and AIDS. We can no longer rely on what one witness called "people with a calling." 
By a personal demonstration of tolerant, less judgmental, more accepting, more 
compassionate, and more constructive attitudes toward all people living with HIV 
infection and AIDS, each of us could help this nation move more swiftly toward the 
changes that must come if we are to truly care for all people and control the HIV 
epidemic. 



166 



The Commission makes the following recommendations: 



1. A comprehensive community-based primary health care system, supported by 
adequate funding and reimbursement rates, is essential for the care and treatment 
of all people, including people living with HIV infection and AIDS. The 
Commission highlighted this need in its first report and continues to believe that lack 
of access to primary care services provided by adequately trained primary care 
providers is undermining current efforts in HIV/ AIDS research, prevention and 
treatment. The development of a comprehensive system with linkages to research 
protocols, existing community-based services, hospitals, drug treatment programs, 
local health departments, and longterm care facilities, based on a foundation of 
adequate support, is long overdue and should be a top priority for the federal 
government. 

2. AIDS education and outreach services in rural communities should be expanded and 
designed to provide clear and direct messages about how HIV is and is not 
transmitted, and the kinds of behaviors that may place an individual at risk for HIV 
and other sexually transmitted diseases. Expansion of programs, resources and 
health care providers is also needed to respond to rural America's need for 
prevention and treatment programs that address the three epidemics of HIV 
infection, drug addiction and sexually transmitted diseases. 

3. The NIH clinical trials program is in serious trouble. The limited number of 
enrollees in trials and the lack of demographic and geographic diversity of the 
participants threatens the success of the program and denies many people living with 
HIV infection and AIDS the opportunity to participate in experimental drug 
therapies. The academic health centers involved have not been as vigorous as one 
would hope in advancing these trials, nor has the NIH been vigorous in monitoring 
their performance. Aggressive efforts must be made to overcome the obstacles to 
participation for many who are under-represented. Success in this area can only be 
measured by increased participation in trials. 

4. There is a desperate need for more research on the management of opportunistic 
infections, usually the cause of death for people with AIDS. The NIH simply must 
expand the level of research in this area. This expansion must not come at the 
expense of other research efforts and should be an integral part of a comprehensive 
AIDS research plan. This plan should outline the AIDS research priorities and goals 
for the entire NIH, and the resources needed to achieve them. The plan 
should be widely disseminated and should incorporate the views of persons living 
with HIV infection and AIDS. 

5. There is a shortage of crisis proportions of health care providers capable and willing 
to care for people living with HIV infection and AIDS. This crisis will only get 
worse as the HIV epidemic continues into the 1990's. Action must be taken how to 

- increase and improve the effectiveness of all programs designed to educate and 
retain practicing health care professionals, and to create incentives for providers to 
care for people in underserved areas. Existing programs such as the National Health 
Service Corps should be expanded. New programs such as those outlined in the 



167 



Disadvantaged Minority Health Improvement Act (H.R. 3240) should be created. 
And, specific HIV/ AIDS fellowships and training programs should be established 
and supported to prevent a crisis of greater magnitude. 

Volunteers should be publicly recognized not only for the invaluable contribution 
they have made to people living with HIV infection and AIDS, but also for the way 
in which they fight fear and bigotry by fostering compassion and caring. The cost 
effective dollars needed to recruit, train, support and manage volunteers must be 
provided by the government and the private sector, and recognized as essential to 
our national response to the HIV epidemic. 



168 



APPENDICES 



Appendix A 
PUBLIC LAW 100-607 



102 STAT. 3104 



PUBLIC LAW 100-607— NOV. 4. 1988 



National 
Commission on 
Acquired 
Immune 
Deficiency 
Syndrome Act. 
42 USC 300cc 
note. 



Research and 
development. 
State and local 
governments. 



Civil rights. 



Subtitle D — National Commission on Acquired 
Immune Deficiency Syndrome 

SEC 241. SHORT TITLE. 

This subtitle may be cited as the "National Commission on 
Acquired Immune Deficiency Syndrome Act". 

SEC 242. ESTABLISHMENT. 

There is established a commission to be known as the "National 
Commission on Acquired Immune Deficiency Syndrome" (herein- 
after in this Act referred to as the "Commission"). 

SEC 243. DUTIES OF COMMISSION. 

(a) General Purpose of the Commission. — The Commission shall 
carry out activities for the purpose of promoting the development of 
a national consensus on policy concerning acquired immune defi- 
ciency syndrome (hereinafter in this subtitle referred to as "AIDS") 
and of studying and making recommendations fcr a consistent 
national policy concerning AIDS. 

(b) Succession. — The Commission shall succeed the Presidential 
Commission on the Human Immunodeficiency Virus Epidemic, 
established by Executive Order 12601, dated June 24, 1987. 

(c) Functions. — The Commission shall perform the following 
functions: , 

(1) Monitor the implementation of the recommendations of 
the Presidential Commission on the Human Immunodeficiency 
Virus Epidemic, modifying those recommendations as the 
Commission considers appropriate. 

(2) Evaluate the adequacy of, and make recommendations 
regarding, the financing of health care and research needs 
relating to AIDS, including the allocation of resources to var- 
ious Federal agencies and State and local governments and the 
roles for and activities of private and public financing. 

(3) Evaluate the adequacy of, and make recommendations 
regarding, the dissemination of information that is essential to 
the prevention of the spread of AIDS, and that recognizes the 
special needs of minorities and the important role of the family, 
educational institutions, religion, and community organizations 
in education and prevention efforts. 

(4) Address any necessary behavioral changes needed to 
combat ADDS, taking into consideration the multiple moral, 
ethical, and legal concerns involved, and make recommenda- 
tions regarding testing and counseling concerning ADDS, 
particularly with respect to maintaining confidentiality. 

(5) Evaluate the adequacy of, and make recommendations 
regarding, Federal and State laws on civil rights relating to 
ADDS. 

(6) Evaluate the adequacy of, and make recommendations, 
regarding the capability of the Federal Government to make 
and implement policy concerning AIDS (and, to the extent 
feasible to do so, other diseases, known and unknown, in the 
future), including research and treatment, the availability of 
clinical trials, education and the financing thereof, and includ- 
ing specifically — 



173 



PUBLIC LAW 100-607— NOV. 4, 1988 102 STAT. 3105 

(A) the streamlining of rules, regulations, and adminis- 
trative procedures relating to the approval by the Food and 
Drug Administration of new drugs and medical devices, 
including procedures for the release of experimental drugs; 
and 

(B) the advancement of administrative consideration by 
the Health Care Financing Administration relating to re- 
imbursement for new drugs and medical devices approved 
by the Food and Drug Administration. 

(7) Evaluate the adequacy of, and make recommendations 
regarding, international coordination and cooperation concern- 
ing data collection, treatment modalities, and research concern- 
ing AIDS. 

SEC. 244. MEMBERSHIP. 

(a) Number and Appointment. — 

(1) Appointment. — The Commission shall be composed of 15 
members as follows: 

(A) Five members shall be appointed by the President — President of U.S. 
(i) three of whom shall be — 

(I) the Secretary of Health and Human Services; 

(II) the Administrator of Veterans' Affairs; and 

(III) the Secretary of Defense; 

who shall be nonvoting members, except that, in the 
case of a tie vote by the Commission, the Secretary of 
Health and Human Services shall be a voting member; 
and 

(ii) two of whom shall be selected from the general 
public on the basis of such individuals being specially 
qualified to serve on the Commission by reason of their 
education, training, or experience. 

(B) Five members shall be appointed by the Speaker of 
the House of Representatives on the joint recommendation 
of the Majority and Minority Leaders of the House of 
Representatives. 

(C) Five members shall be appointed by the President pro 
tempore of the Senate on the joint recommendation of the 
Majority and Minority Leaders of the Senate. 

(2) Congressional committee recommendations. — In 
making appointments under subparagraphs (B) and (C) of para- 
graph (1), the Majority and Minority Leaders of the House of 
Representatives and the Senate shall duly consider the rec- 
ommendations of the Chairmen and Ranking Minority Mem- 
bers of committees with jurisdiction over laws contained in 
chapter 17 of title 38, United States Code (relating to veterans' 
health care), title XLX of the Social Security Act (42 U.S.C. 1901 
et seq.) (relating to Medicaid), and the Public Health Service Act 
(42 U.S.C. 201 et seq.) (relating to the Public Health Service). 

(3) Requirements of appointments. — The Majority and 
Minority Leaders of the Senate and the House of Representa- 
tives shall — 

(A) select individuals who are specially qualified to serve 
on the Commission by reason of their education, training, 
or experience; and 

(B) engage in consultations for the purpose of ensuring 
that the expertise of the 10 members appointed by the 
Speaker of the House of Representatives and the President 



174 



102 STAT. 3106 PUBLIC LAW 100-607— NOV. 4, 1988 

pro tempore of the Senate shall provide as much of a 
balance as possible and, to the greatest extent possible, 
cover the fields of medicine, science, law, ethics, health-care 
economics, and health-care and social services. 

(4) Term of members.— Members of the Commission (other 
than members appointed under paragraph (lXA)(i)) shall serve 
for the life of the Commission. 

(5) Vacancy. — A vacancy on the Commission shall be filled in 
the manner in which the original appointment was made. 

lb) Chairman.— Not later than 15 days after the members of the 
Commission are appointed, such members shall select a Chairman 
from among the members of the Commission. 

(c) Quorum. — Seven members of the Commission shall constitute 
a quorum, but a lesser number may be authorized by the Commis- 
sion to conduct hearings. 

(d) Meetings. — The Commission shall hold its first meeting on a 
date specified by the Chairman, but such date shall not be earlier 
than September 1, 1988, and not be later than 60 days after the date 
of the enactment of this Act, or September 30, 1988, whichever is 
later. After the initial meeting, the Commission shall meet at the 
call of the Chairman or a majority of its members, but shall meet at 
least three times each year during the life of the Commission. 

(e) Pay. — Members of the Commission who are officers or em- 
ployees or elected officials of a government entity shall receive no 
additional compensation by reason of their service on the 
Commission. 

(f) Per Diem. — While away from their homes or regular places of 
business in the performance of duties for the Commission, members 
of the Commission shall be allowed travel expenses, including per 
diem in lieu of subsistence, at rates authorized for employees of 
agencies under sections 5702 and 5703 of title 5, United States Code. 

(g) Deadline for Appointment. — Not earlier than July 11, 1988, 
and not later than 45 days after the date of the enactment of this 
Act, or August 1, 1988, whichever is later, the members of the 
Commission shall be appointed. 

SEC. 245. REPORTS. 

(a) Interim Reports.— 

(1) In general. — Not later than 1 year after the date on 
which the Commission is fully constituted under section 244(a), 
the Commission shall prepare and submit to the President and 
to the appropriate committees of Congress a comprehensive 
report on the activities of the Commission to that date. 

(2) Contents.— The report submitted under paragraph (1) 
shall include such findings, and such recommendations for 
legislation and administrative action, as the Commission consid- 
ers appropriate based on its activities to that date. 

(3) Other reports. — The Commission shall transmit such 
other reports as it considers appropriate. 

(h) Final Report.— 

(1) In general. — Not later than 2 years after the date on 
which the Commission is fully constituted under section 244(a), 
the Commission shall prepare and submit a final report to the 
President and to the appropriate committees of Congress. 

(2) Contents. — The final report submitted under paragraph 
(1) shall contain a detailed statement of the activities of the 
Commission and of the findings and conclusions of the Commis- 



175 



PUBLIC LAW 100-607— NOV. 4, 1988 102 STAT. 3107 

sion, including such recommendations for legislation and 
administrative action as the Commission considers appropriate. 

SEC 246. EXECUTIVE DIRECTOR AND STAFF. 

(a) Executive Director. — 

(1) Appointment.— The Commission shall have an Executive 
Director who shall be appointed by the Chairman, with the 
approval of the Commission, not later than 30 days after the 
Chairman is selected. 

(2) Compensation.— The Executive Director shall be com- 
pensated at a rate not to exceed the maximum rate of basic pay 
payable under GS-18 of the General Schedule as contained in 
title 5, United States Code. 

(b) Staff. — With the approval of the Commission, the Executive 
Director may appoint and fix the compensation of such additional 
personnel as the Executive Director considers necessary to carry out 
the duties of the Commission. 

(c) Applicability of Civil Service Laws.— The Executive Director 
and the additional personnel of the Commission appointed under 
subsection (b) may be appointed without regard to the provisions of 
title 5, United States Code, governing appointments in the competi- 
tive service, and may be paid without regard to the provisions of 
chapter 51 and subchapter III of chapter 53 of such title relating to 
classification and General Schedule pay rates. 

(d) Consultants. — Subject to such rules as may be prescribed by 
the Commission, the Executive Director may procure temporary or 
intermittent services under section 3109(b) of title 5, United States 
Code, at rates for individuals not to exceed $200 per day. 

(e) Detailed Personnel and Support Services. — Upon the re- 
quest of the Commission for the detail of personnel, or for adminis- 
trative and support services, to assist the Commission in carrying 
out its duties under this Act, the Secretary of Health and Human 
Services and the Administrator of Veterans' Affairs, either jointly 
or separately, may on a reimbursable basis (1) detail to the Commis- 
sion personnel of the Department of Health and Human Services or 
the Veterans' Administration, respectively, or (2) provide to the 
Commission administrative and support services. The Secretary and 
the Administrator shall consult for the purpose of determining and 
implementing an appropriate method for jointly or separately 
detailing such personnel and providing such services. 

SEC. 247. POWERS OF COMMISSION. 

(a) Hearings. — For the purpose of carrying out this Act, the 
Commission may conduct such hearings, sit and act at such times 
and places, take such testimony, and receive such evidence, as the 
Commission considers appropriate. The Commission may administer 
oaths or affirmations to witnesses appearing before the Commission. 

(b) Delegation. — Any member or employee of the Commission 
may, if authorized by the Commission, take any action that the 
Commission is authorized to take under this Act 

(c) Access to Information. — The Commission may secure directly 
from any executive department or agency such information as may 
be necessary to enable the Commission to carry out this Act, except 
to the extent that the department or agency is expressly prohibited 
by law from furnishing such information. On the request of the 
Chairman of the Commission, the head of such department or 
agency shall furnish nonprohibited information to the Commission. 



176 



102 STAT. 3108 PUBLIC LAW 100-607— NOV. 4, 1988 

(d) Maius.— The Commission may use the United States mails in 
the same manner and under the same conditions as other depart- 
ments and agencies of the United States. 

SEC. 248. AUTHORIZATION OF APPROPRIATIONS. 

There is authorized to be appropriated for fiscal year 1989 
$2,000,000, and such sums as may be necessary in any subsequent 
fiscal year, to carry out the purposes of this Act. Amounts appro- 
priated pursuant to such authorization shall remain available until 
expended. 

SEC. 249. TERMINATION. 

The Commission shall cease to exist 30 days after the date on 
which its final report is submitted under section 2450o). The Presi- 
dent may extend the life of the Commission for a period of not to 
exceed 2 years. 



177 



Appendix B 

SUPPORTING DOCUMENTS FOR BACKGROUND PAPER 
ON IMMIGRATION 



SFXTFFm, 



mnmrMjzQNi 



i&USgk'pfi 



xnmAms 



SAN FRANCISCO, CALIFORNIA USA * 20-24 JUNE 1990 



November 17, 1989 



I 'niversity (if 

California 

San Francisco 



•■~o-\t)<j>iS(ir< 

World Health 
Organization 

City and County 
i if San Francisco 

American 
Foundation for 

. 1/1)5 Researcu 

International 
AIDS Society 



I ocal I'rri'jreim 
Office 

University of 

California 

San Francisco 

Box 1505 

San Francisco 

California 

•1414.1-1505 

I SA 

Telephone 
-H5-550-VN.YO 

Telefax 

415-550-OHHd 




June E. Osborn, M.D. 

Chair 

National Commission on AIDS 

1730 K Street N.W. Suite 815 

Washington, D.C. 20006 



Dear Dr. Osborn, 



As you are aware, the Sixth International Conference on AIDS has 
been deeply involved in attempts to eliminate all federal regulations 
restricting travel of HIV infected individuals to the United States. 

The government took a positive first step when, on May 25, the 
Justice Department issued directives establishing a procedure by which HIV 
infected individuals may obtain waivers to enter the United States. We wish 
to make clear, however, that federal policy on this issue remains medically 
unsound and counter-productive to global efforts to control the AIDS 
epidemic. 

We write to urge the National Commission on AIDS to use its 
influence with all appropriate agencies of the federal government to achieve 
the elimination of restrictions on travel of HIV infected individuals to the 
United States. 

AIDS is not a casually contagious disease, and is spread only by 
engaging in certain high risk behaviors. HIV infected foreigners pose no 
greater health risk to residents of the United States who practice safe sexual 
behaviors than any other individuals. Suggesting that they are a threat does 
nothing to assist the government's own efforts to reduce unwarranted fear 
of HIV. 

Given the medical facts about the risks of AIDS transmission, the 
federal government is not assisting in control of the AIDS epidemic through 
its. policies on travel of HIV infected people. The government may, in fact, 
be doing harm to the global effort to control AIDS. 



181 



An important goal of eliminating barriers to travel of HIV infected 
individuals is assuring participation of HIV infected AIDS researchers, 
educators and service providers in meetings directed at controlling the 
epidemic globally. The May 25 directives have not resolved the threat 
posed to free exchange of knowledge and information required to control 
AIDS. 

HIV infected individuals take many unacceptable risks in applying 
for and obtaining a waiver to travel to the United States. 



We share the concern of many of our delegates that they may suffer 
severe discrimination if the government of their country of residency is 
allowed to access information concerning their HIV status obtained through 
the HIV waiver process. We are also concerned that documentation in 
passports and visas that in any way suggests an individual may be HIV 
infected could result in the limitation of international travel over which the 
United States should have no control. 

Additionally, we take strong exception to the power of government 
officials to require travellers to submit to HIV antibody tests. The World 
Health Organization has stated that such policies will do little or nothing to 
control the spread of AIDS. The United States has carefully avoided taking 
these highly intrusive steps with its own citizens. We can think of no 
medical justification for doing so with travellers to this country. 

The May 25 directives were intended in part to protect the 
leadership of the United States in AIDS research, treatment, education and 
social services by assuring that HIV infected scientists and service providers 
can participate in AIDS related meetings here. Given the many problems 
with the directives, however, there appears to be increased international 
refusal to attend AIDS related meetings in this country. We know the 
Commission understands how significant a threat this poses to the goal of 
controlling AIDS, and to the image of the United States among all people of 
the world anxious for a response to the epidemic. 

Finally, we concur with Members of Congress, including Senator 
Wilson and Representative Pelosi, that it was not the intent of the Senate in 
adopting legislation restricting immigration of HIV infected people to also 
restrict the travel of HIV infected individuals. It is also clear from 
comments by the Secretary of Health and Human Services in the Federal 
Register on June 8, 1987 that the proposed rules governing immigration of 
HIV infected individuals were not intended to control travel. 

Enclosed is a Resolution of the delegates to the Vth International 
Conference on AIDS in Montreal calling on all governments to permit 
unrestricted entry of HIV infected travellers. 



182 



We appreciate the leadership of the National Commission on AIDS on 
this critical issue which threatens discrimination against many individuals 
important to the effort to identify solutions to the AIDS epidemic. 

Please contact us if we can provide further information as the 
Commission deliberates this issue and considers its approach to the 
administration to correct this unsound policy. 



Sincerely, 






£/ John Ziegler, M.D. Paul Volberding, M.D. 

Co-Chair Co-Chair 



cc: James Mason, M.D. 



183 



A RESOLUTION OF 

THE DELEGATES TO THE VTH INTERNATIONAL CONFERENCE ON AIDS 

CALLING ON ALL GOVERNMENTS TO PERMIT ENTRY OF 

HIV INFECTED TRAVELERS 



WHEREAS, AIDS and HTV infection are not casually transmitted and travelers infected with HTV do not pose a 
health risk to others; and 

WHEREAS, Restrictions on travel of HTV infected people are not medically or scientifically justified and will not 
play a significant role in preventing the spread of the AIDS epidemic; and 

WHEREAS, People with AIDS and HrV infection have taken leadership roles in altering the course of the AIDS 
epidemic throughout the world as physicians, researchers, care providers and patients; and 

WHEREAS, Several nations now deny or limit the entry of HIV infected people for purposes of travel; and 

WHEREAS, Such restrictions inhibit the free exchange of critical research and information upon which all nations 
depend to respond to the AIDS epidemic; and 

WHEREAS, The World Health Organization opposes the "stigmatization" of persons with AIDS and HTV infection 
and supports an open border policy in all nations with regard to persons with HTV infection; and 

WHEREAS, The government of the United States has recemly taken steps that will permit HTV infected individuals 
to seek waivers to enter the country solely for the purposes of attending conferences, visiting relatives, obtaining 
medical treatment and conducting business; 

BE IT RESOLVED, That the delegates to the Fifth International Conference on AIDS condemn the policies of 
nations which restrict the entry of HTV infected travelers; and 

BE IT FURTHER RESOLVED, That the delegates to the Fifth International Conference on AIDS call on the 
governments of all nations to adopt policies permitting entry of HTV infected travelers; and 

BE IT FURTHER RESOLVED, That the delegates to the Fifth International Conference on AIDS seek assurances 
from the Government of the United States that all persons wishing to attend the Sixth International Conference on 
AIDS in San Francisco will be assured entry into the United States regardless of HTV status; and 



Approved at Closing Ceremonies 
June 9, 1989 



184 



UK NCO AIDS CONSORTIUM FOR THE THIRD WORLD 



Professor June Osborn 

Chairman, National Commission on AIDS 

University of Michigan 

November 16, 1989 

Dear Professor Osborn, 



Martin wmteside. Chairperson 
Sue Lucas, co-orainator 



REt OS ENTRY RESTRICTIONS AMD VI th INTERNATIONAL CONFERENCE ON AIDS 

IN SAM FRANCISCO, JUNE 1989 

We have recently become aware of the full implications of the US 
entry restrictions for people who are HIV positive or have AIDS, and 
we are writing to you in the belief that you will not only appreciate 
how serious these are, but also will be able to influence the 
thinking in the US on this matter. Dr Tony Pinching of St Mary's 
Hospital in London suggested your name. 

I am sure that you are only too well aware of the current 

restrictions, and the fact that a person who is HIV positive or 

who has AIDS must apply for a waiver if he or she wishes to enter the 

States. The visa is then for a maximum period of 3 days, and 

only if the purpose of the visit is business, a conference, medical 

treatment or to visit relatives. 

I have just received further information about this from Barbara 
Wallace of the League of Red cross and Red Crescent Societies in 
Geneva, who recently visited the Department of State in Washington DC 
and spoke to the Associate Director of Visa Services about how the 
waiver works in practice. 

The procedure is as follows: 

Anyone wishing to enter the States must fill out a form obtained from 
the American Embassy in their own country. If they are HIV positive 
or have any other sexually transmitted or contagious disease, they 
are supposed to tick the relevant section on the form. An interview 
with Embassy staff is then arranged, to find out further details. If 
the person has a treatable disease, (eg syphilis) they are told to go 
and get treatment and then re-apply. If, however, they state that 
they have HIV, and request a waiver, the decision becomes a matter 
for the Attorney General. An unclassified cable is sent to the 
Attorney General's Office (which for African countries is in Rome) 
giving details of the person's name, serostatus and request for a 
waiver. The decision is taken in about a week to ten days. If a 
waiver is granted, the person's passport is stamped with a visa with 
a number 6 at the bottom. This number refers to 2286 - the number for 
dangerous and contagious diseases - and indicates to the Immigration 
and Naturalisation Service (INS) officials that a waiver has been 
granted for one of these conditions. In theory this could mean a 
number of conditions, but in practice this nearly always means HIV, 
since anyone with a treatable disease will be encouraged to return 
after seeking treatment. The meaning of the number 6 is not 
confidential information. 



Three castles House. 1, London Bridge street, London SE1 9SC Tel: 01-378 1403 Fax: 01-403 6003 



185 



Not only is the information that a person is HIV positive permanently 
marked in his or her passport, but it is also recorded in the US 
Embassy records in his or her home country. Although these records 
are not open to the public, they are not kept confidential from 
embassy staff, who include those recruited locally. 

This procedure clearly compromises the confidentiality of HIV 
positive people and people with AIDS and could be particularly 
serious for nationals of countries where the government suppresses 
the rights of people who are HIV positive. 

There are also implications for agencies who wish to sponsor 
individuals to conferences in the states, in particular the Vlth 
International Conference on AIDS. By offering sponsorship, the agency 
may be putting an individual into the position of either identifying 
him or herself as HIV positive or breaking the law. In addition, if a 
sponsored individual who was HIV positive entered without a waiver 
and was then found to be or suspected of being HIV positive, this 
could involve considerable legal and repatriation fees - which 
sponsors would presumably have to meet. Several Consortium members 
feel that they cannot sponsor conference attendance in the US, 
especially for the VTth international AIDS Conference in San 
Francisco, while the current regulations are in force. 

We hope very much that your influence - and that of others who realise 
the serious and permanent consequences of the US policy to 
individuals - can bring about some change before the Conference. If 
not, and if it is impossible to change the venue, then several 
Consortium members feel that they will have to boycott the 
Conference. This position has already been taken by the Scandinavian 
AIDS and HIV organisations, and some British organisations. The 
League of Red Cross and Red Crescent societies has also just 
withdrawn from the conference. No-one wants to take this step, 
because we believe that there is value in meeting annually and of 
having the widest possible representation, including people who are 
HIV positive and have AIDS, and people from the worst, affected 
countries. But we cannot recommend that anyone should be put in a 
position in which they must reveal their serostatus to officials who 
will both mark their passports and keep a permanent record. 

Yours sincerely 

Sue Lucas 

For Consortium Steering Group 

cc "rof LO Kallings, President IAS, Sweden 

Prof. P volberding, President Elect IAS, Joint Chairman, vith 

international Conference on AIDS , USA 

Prof F Deinhardt Executive Secretary, IAS, Germany 

.Prof June Osborn, Chairman Presidential AIDS Commission, USA 

Norbert Gilmore, Royal victoria Hospital, Canada 

Justice Michael Kirby, President of the Court of Appeal, Supreme 

Court, Australia 

Senator Edward Kennedy 



186 



+c 



Your Ref. 

Our Ref. HD/BWS 



LEAGUE OF RED CROSS 

AND RED CRESCENT SOCIETIES 

International Federation of 

National Red Cross and Red Crescent 




Dr. June Osborne 
National Commission on AIDS 
1730 K St. N.W. 
Washington, D.C. 20006 



29 November 1989 



Dear Dr. Osborne, 

I am writing to inform you of the League of Red Cross and Red Crescent 
Society's decision to withdraw from participation in the Vlth 
International Conference on AIDS in San Francisco, and of the reasons 
for that decision. We hope that by taking a stand on this issue at an 
early date, it may still be possible for changes in the U.S. visa 
regulations or their application to be made prior to the Conference. 
The League and our National Societies have participated actively in 
the two previous International Conferences, and very much regret the 
situation which makes it necessary for us to withdraw from the 
Conference in San Francisco. 

I have attached a copy of a statement which we released on November 
21, explaining our position. The decision was not taken lightly. 
Concern about the visa policy had first been expressed during a 
meeting of the Red Cross European and North American Task Force on 
AIDS in Stockholm in October. We wrote to the American Embassy in 
Switzerland asking for clarification on a number of points, and they 
referred us to the State Department. I travelled to Washington in 
November, and met with Richard H. Williams, Associate Director for 
Visa Services, on November 8. 

As you are aware, a number of countries have experienced active 
discrimination against people with HIV/AIDS, so we were particularly 
concerned about the waiver procedure. Any process which exposes HIV 
status could put people at risk in their home country. We were also 
concerned about entry procedures in the U.S., which have already 
caused problems for a number of HIV positive people, and the potential 
liability (both financial and ethical) of the League should we sponsor 
delegates who are later detained and deported. 

Mr. Williams informed me that everyone who applies for a visa at the 
American Embassy in their home country, and who has HIV or certain 
other sexually-transmitted or contagious diseases, is supposed to tick 
the appropriate category of Section 35- They are then interviewed by 



17. chemtn dcsCrets 

Pettl-Saconncx 

Geneva 



Postal address: 

P O. Bm 372 
CH- 1211 Geneva 19 
Switzerland 



Postal cheque 

account 

Geneva 12-8020-: 



Telephone 1022) 734 55 80 

Telesramme LICROSS-GENEVA 

Telex 22555 LRCS CH 

Telefax (022) 73] 03 95 



187 



Embassy staff and asked to explain why they ticked this section. If 
they state that they have HIV, and request a waiver, an unclassified 
cable is sent to the Attorney General's office giving details of the 
person's name, serostatus and request for a waiver. The decision is 
taken in about a week. If the waiver is granted, the person's 
passport is stamped with a visa with the number "6" at the bottom. 
This number refers to 2286 - dangerous and contagious diseases - and 
indicates to Immigration and Naturalisation Service officials that the 
person has received a waiver for one of these conditions. In theory 
this could mean a number of conditions; in practice, according to Mr. 
Williams, it will nearly always mean HIV, since anyone with a 
treatable disease will be encouraged to return after seeking 
treatment. The meaning of the number 6 is not confidential, and a 
permanent record of the person's HIV status is kept in the Embassy 
records of the person's home country, where according to Mr. Williams 
it could be seen by Embassy staff. 

This procedure clearly compromises the confidentiality of HIV positive 
people at several points, and could be particularly serious for 
nationals of countries where discrimination against people with HIV is 
common and/or condoned by the government. 

This issue is extremely worrying for us because we have Red Cross or 
Red Crescent Societies in 149 countries, including those most 
affected by AIDS and those in which discrimination is a problem. We 
know that among our own staff a number of people are seropositive; 
these people may be some of our best workers, and would thus be likely 
to be offered sponsorship to San Francisco. For example, in one East 
African country where adult seropositivity rates are very high, the 
field staff of the National Society who gave blood during an AIDS 
training seminar were later found to have a seropositivity rate of 
nearly $0%. We have a humanitarian mandate to do everything in our 
power to prevent discrimination against people with HIV and AIDS; in 
addition, we have a personal stake in the visa issue because it will 
affect our Red Cross and Red Crescent staff. 

We felt we had no alternative but to withdraw from the Conference, 
since we could not continue our planning while such visa regulations 
are in force. If we were to encourage our National Society staff to 
apply for sponsorship to the Conference, we would be faced with three 
options: encourage people not to declare their HIV status, which 
would mean we were encouraging them to break the law; encourage them 
to declare, which would mean that through our sponsorship they would 
be subjected to loss of confidentiality and possible discrimination 
(both in their home country and at entry into the U.S., where INS 
officials' behaviour is unpredictable); or encourage seropositives 
not to apply for sponsorship, which would mean we were participating 
in discrimination. All these options are untenable, since they are in 
clear violation of the stand taken against discrimination by the 
League General Assembly and contrary to the humanitarian mandate of 
the Red Cross Movement. 

We have already received strong statements of support for the League 
position from European and North American Red Cross Societies, and 



188 



expect further support from other regions when they have had time to 
receive and respond to our position paper. 

We urge you to bring this matter before the National Commission on 
AIDS, and trust that the Commission will do everything in its power to 
effect a change in the visa requirements or their application. It 
would be regrettable if the visa requirements prevented the Vlth 
International Conference from being the same type of international 
gathering which took place in Stockholm and Montreal. It would be 
tragic if the voices of people with HIV and AIDS from all parts of the 
world were not heard in San Francisco, or heard under conditions which 
violate human dignity and personal safety. 

Yours sincerely, 



fad/fa c(mI<^\ 



Barbara Wallace 
AIDS Coordinator 



cc. American Red Cross 



189 



STATEMENT BY THE LEAGUE OF RED CROSS AND RED CRESCENT SOCIETIES 
REGARDING PARTICIPATION IN THE SIXTH INTERNATIONAL CONFERENCE 
ON AIDS IN SAN FRANCISCO 



The League of Red Cross and Red Crescent Societies has decided to 
withdraw from participation in the Vlth International Conference on 
AIDS which will be held in San Francisco from June 20-24, 1990. 

Par Stenback, the Secretary General of the League in announcing this 
decision referred to the apparent conflict between U.S. visa policy 
regarding HIV positive individuals who might wish to attend the 
Conference and the Red Cross and Red Crescent principles of 
humanitarian support for and prevention of discrimination against 
people with HIV infection or AIDS. 

The League will reconsider its position should there be changes in the 
U.S. visa regulations or their application. 

Current U.S. regulations prohibit the granting of a visa to people 
with HIV infection or AIDS who wish to visit the U.S. It is possible 
for those who declare that they are HIV positive to apply for a waiver 
for up to 30 days if they are going for business, medical or family 
reasons. However, the procedure of granting this waiver and marking 
the visa does not provide satisfactory guarantees of confidentiality 
for the person in his or her home country or in other countries. 

Decision 24 of the League of Red Cross and Red Crescent Societies' 
Vlth General Assembly in 1987. which called all National Societies to 
action against AIDS, urged "all National Societies to do everything in 
their power to prevent discrimination against and offer humanitarian 
support to people who are carriers of HIV, people with AIDS and their 
families . " To sponsor delegates or otherwise participate in the 
Conference would be in conflict with this mandate, as the League would 
appear to condone discriminatory visa policies . Should delegates from 
Red Cross or Red Crescent Societies who are seropositive be sponsored 
to attend, they would be put at risk from discriminatory policies and 
breaches in confidentiality. Conversely, if seropositive staff 
members were advised not to apply for sponsorship, the League would be 
participating in discrimination. 

In addition to the League decision regarding discrimination, the 4lst 
World Health Assembly (May 1988) resolved that member states should 
"protect the human rights and dignity of HIV infected people and 
people with AIDS... and avoid discriminatory action against and 
stigmatisation of them in the provision of services , employment and 
travel" . 

In the IV International Conference in Stockholm and the Vth 
International Conference in Montreal, the League of Red Cross and Red 
Crescent Societies played a very active role. In Stockholm, the 



190 



Swedish Red Cross organised a day-long meeting on the psychosocial 
aspects of the AIDS pandemic, ran a rest centre for people with AIDS, 
and organised a meeting for delegates from National Societies in 30 
countries. There was also a League booth and display. A member of 
the Uganda Red Cross gave a moving address at the closing ceremony in 
which she asked all delegates to stand for a moment of silence to 
remember those who had died of AIDS around the world. 

During the Montreal Conference, the League's exhibition of children's 
posters drawn by Red Cross and Red Crescent youth on themes of care, 
hope and compassion formed a key display. The League sponsored 15 
delegates from developing countries, who also took part in the 
pre-conference meeting for non-governmental organisations. The League 
organised a series of international meetings for National Society 
delegates from 40 countries, covering topics such as "Working with 
youth at risk and street children", "Working with other 
non- governmental organisations including seropositive groups", "Blood 
donor education and counselling" , and "Working at the grassroots - 
branches and chapters". The Canadian Red Cross provided all First Aid 
services to the Conference, and ran a rest centre and shuttle service 
for people with AIDS in cooperation with a Canadian seropositive 
group. 

Similar activities had been planned for San Francisco before the visa 
issue arose. The League position does not imply a lack of support for 
the Conference organisers, or a failure to recognise the importance of 
such international gatherings. 

21 November 1989 



191 




WORLD FEDERATION OF HEMOPHILIA 

FEDERATION MONDIALE DE L'HEMOPHILIE 

FEDERACION MUNDIAL DE HEMOFIL1A 



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October 12. 1989 



UMHIUHIII 



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President George Bush 

The White House 

1600 Pennsylvania Avenue N.W. 

Washington. D.C.. 20015. U.SA. 



M *" , "" mw Dear Mr. Prendent: 



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In the name of Uie World Federation of Hemophilia, which has National 
Member Organizations in sixty-eight countries, and whose purpose is to strive to 
improve the quality of life for people afflicted with hemophilia, we wish to bring to 
your attention a situation which is particularly painful to this group of people. As 
well as having to learn to live with a life long physical disorder, recently they have 
been struck with a new drama: The very blooa product which gave them hope has 
now condemned- them to disaster. Many "have contracted HTV because of 
contaminated blood products. 

In August 1990, the World Federation of Hemophilia will hold its XDC 
International Congress in Washington, D.C Recently it has been brought to ■ our 
attention that as of 1987 the U.S< Congress approved an immigration policy whereby 

| any person with HTV must declare their status and subsequently request an exemption 
i in order to enter the United States. We feel that this truly is a discriminatory act, 
I especially coming from a country which forged its very existence on the principle of 
i freedom and respect for individual rights. People with hemophilia who have 
i contracted HTV are innocent victims of the terrible leprosy of AIDS . 

It has become so internationally sensitive that a few weeks ago, the 
I Haemophilia Society of the United Kingdom called for a global boycott to protest the 
I U.S. Immig r a tion policy. Other member countries are now debating whether they 
should follow up with a similar call for a boycott. 

We beg your immediate intervention on this delicate issue and bring this to 
your personal attention because there is no time for Congress to change the policy 
before the World Federation's meeting. The participants need to know immediately 
whether they win" be subjected to mis interrogation or whether they may plan their 
trip. People from, many countries who live in constant pain and anguish and need 
support and encouragement are hoping that they may attend the World Federation's 
Congress without being forced to disclose their stems, an infringement of their 
human rights. As you can. understand, Mr. President, the benefits these people 
derive from such a Congress are vitally i m po rta nt to their lives. Yet unless there is 
s uffi cie nt participation we may see ourselves in the unfortunate position of being 
forced to cancel the event. 



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192 



Mr. George Buih October 12. 1989 

tt~t ! ■■*■■■■■■■ ■■ ■■■ i ■■■■■■■ ■■■■■■pwaaBaBM W BiBBa»»Bi«« i B«i ifT ■iinii mnmiimnmim 

Our request, in the name of those who suffer from hemophilia worldwide, is 
that you grant them the possibility to enter the United States of America next August 
without undergoing the humiliation of having to disclose publicly their health 
condition. On an: international level, this will truly demonstrate to the world the 
humanitarian hand of the American people. 

Thank you for your concern and help. 

Gratefully yours, 



(2&^J^a~~~ > 



Charles J. Carman 
President 




"tr^ 



Declan Murphy 

Executive Director 



CJC/DM:an 



193 



THE WHITE HOUSE 

WASHINGTON 

November 15, 1989 



Dear Mr. Carman: 

Thanks for your recent letter on behalf of the World Federation 
of Hemophilia. It is indeed a cruel misfortune that many who 
suffer from hemophilia have now through transfusion contracted 
the HIV virus. 

I asked my new INS Commissioner, Gene McNary, to review 
the immigration issue you've raised and have now received his 
reply. In 1987, the Congress passed a law adding HIV to the 
list of dangerous diseases that render aliens excludable from 
the United States. The INS is, of course, enforcing this law. 

There is, as your letter notes, an exemption process that allows 
individuals infected with the HIV virus to enter the United States. 
I have been assured that the INS is sensitive to preventing any 
possible embarrassment connected with making such an application. 

Special instructions regarding enforcement of this law have been 
sent to INS field offices. The application for a waiver may be 
made at any American consulate abroad at the time of application 
for a visa. In humanitarian cases involving medical problems such 
as hemophilia, the waiver process can be expedited. Medical infor- 
mation provided in the exemption application is held confidential 
and is not subject to public disclosure. 

Gene McNary is also writing you and will supply additional 
information about our enforcement of this statute. 



Sincerely, 




/ 



Mr. Charles J. Carman 

President 

World Federation of Hemophilia 

Suite 830 

1450 City Councillors Street 

Montreal H3A 2E6 

CANADA 



194 




Society 
canadienne 
de ITifemophilie 



Canadian 

Hemophilia 

Society 



14S0. lut Cilv Councillor* ouruu MO 
Mono**. Quebec H3A 2E£ 
Td:ISMI84tUIS03 
Fu: (514) 84841337 



344 Ducm bow. Sun 206. 
Toronto. OrMno MS R 3 R 4 
TH: (416)922 2132 
f«i(4I6)922 1COT 



US Travel Restrictions 

The Executive Committee of the 
Canaaian Hemophilia Society held their 
fall meeting in Montreal on October 14 & 
15. One very important issue that was 
r aisea. was tne concern regarding the 
egisiation ooncv tnat was oassea ov tne 
United States Congress tnat requires 
those wno are HIV positive to declare 
their status Pefore they can legally enter 
the US. 

The CHS Executive Committee 
unanimously agreed that this is an 
unacceptable violation of human rights 
and spent considerable time discussing 
what action they would take. 

The following letter to Mr. Charles 
Carman. President of the World 
Federation of Hemophilia, with the 
attachea motion clearly states the position 
of the Canaaian Hemophilia Society 
with regaras to the US legislation and 
the necessity not to condone travel to 
the United States. 

We win enaeavour to keep you 
niormea ot this very important issue 
througn uoaates in Hemopnilia Today. 










Montreal, October 16th, 1989 



Mr. Charles Carman 

President 

World federation of Hemophilia 

1450 City Councillors, Suite 830 

Montreal, Quebec 

H3A 2E6 



Dear Mr. Carman, 

The Executive of the Canadian Hemophilia Society met on 
October 14-15. Considerable time was spent discussing the 
U.S. government policy requiring foreign visitors to 
disclose HIV status. 

Members of the Executive unanimously agree with the 
opinions expressed by both you and the Executive Director, 
Mr. Declan Murphy, that this is an unacceptable violation 
of human rights. In addition, we strongly endorse your 
efforts to obtain a change in this law and will offer 
assistance as necessary to support you. I will use my 
contacts within the Canadian government to put pressure on 
the American Congress. 

The Executive members sincerely believe that the Canadian 
Hemophilia Society should not place people in the position 
of having to reveal their HIV status. Therefore, until 
this law is changed the CHS will not support travel to the 
United States. We realize the implications of this 
decision and hope that these restrictions will not have to 
remain in place for long. 

Please count on our support and cooperation in having this 
discriminatory policy reversed. Also please find attached 
the motion passed by the Executive outlining our position. 

I look forward to hearing from you on this important matter 
In the near future. 



£ 



Sincerely yours, 



Elaine Woloschuk 
CHS, President 



EW/lf 



CHS Membership 

WFH Member Organizations 



Due to legislative policy that was passed by the United States Congress 
which requires those who are H.I.V. positive to declare their status 
before they can legally enter the United States of America; 

1. The CHS does not condone travel to the U.S. on CHS business. (It is 
understood that the CHS will fulfill immediate commitments in a 
professional manner and only enter new commitments on the approval of 
the President. ) 

2. The CHS will request that the Canadian government intervene with the 
American government to have this policy reversed. 

3. The CHS will work with the WFH to effect a change in the U.S. law. 

4. The CHS will propose that the 1990 Congress be moved out of the U.S. 

5. The CHS will inform the WFH and its national member organizations of 
its decision. 



Passed unanimously on October 15, 19B9 

Canadian Hemophilia Society, Executive Committee 



12/Hemoonma Toaav 





195 



■Sv**- 



EMBASSY OF THE 
JNITED STATES OF AMERICA 

SeDtember 29, 1989 



Kurt Eriksen 

President 

Dansk Socialradgiverf orening 

Toldbodgade 19A 

1253 Kobenhavn K 



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Dear Mr. Eriksen: 

I have good news from the United States regarding travel 
of HIV-positive persons. The guidance provided in May, 
which I sent to you, has been found too restrictive. New 
guidelines on this subject make it easier for HIV carriers 
to visit the U.S. 

In evaluating any HIV-positive waiver request, the 
Immigration and Naturalization Service (INS) will weigh 
the risk of harm to society if the applicant is admitted 
and the nature of the applicant's reasons for wanting to 
enter the U.S. Also considered are: Danger to public 
health, possibility of spread of the infection, and cost 
which might be incurred by our government. The risk to 
public health must be balanced against the public benefit 
which would be realized if the waiver were granted. 

The May 1989 INS guidance that "entry into the United 
States... for tourism. . .alone does not constitute the 
requisite public benefit to overcome the risk" ended up 
meaning that a child who had contracted AIDS at birth or 
through a blood transfusion, and who obviously would pose 
little danger of spreading the infection, would be unable 
to go with his family on a vacation in the U.S. Such 
waivers will now be granted. 

There were also complaints received regarding the 30-day 
limit for waivers, which make extended medical treatment 
in the U.S. for AIDS victims impossible. There are 
undoubtedly cases in which longer stays in the U.S. would 
increase the public health risk posed by a visiting AIDS 
victim. 

On the other hand, an AIDS sufferer who would be staying 
in a hospital while undergoing treatment, or in a clinic 
while participating in a research program, would pose a 
minimal public health risk, while possibly offering a 
substantial public benefit. 



196 



So, our policy has now changed: HIV carriers who wish to 
visit the U.S. for tourism, or who wish to stay for more 
than 30 days, whose presence in the U.S. would confer a 
public benefit outweighing the risk to public health, will 
be able to obtain visas. In such cases, we must still 
forward the case to the INS in Frankfurt for their final 
decision. 

If you have further questions, please do not hesitate to 
contact us. 



Sincerely, 




/leUJ^i^Jr 



Robert Fretz 
Consul 



197 



£oalitiox for Immigrant andJ^efugee^Jights and^erytces 



2111 Mission Street. Room 401 • San Francisco. California 94110 • (415) 626-2360 

November 8, 1989 

Dr. June E. Osborne 
National AIDS Commission 
1730 K Street N.W. 
Washington, D.C. 20006 

Dear Dr. Osborne: 

We enjoyed meeting you and having the opportunity to 
discuss the issue of the HIV antibody testing of immigrants 
with you while you were here in San Francisco last month at 
the National AIDS Update. We have enclosed a comprehensive 
packet of background information for your staff and hope that 
the National AIDS Commission will examine this issue and make 
some public policy recommendations in this area. This letter 
outlines some of our most urgent concerns. 

Of the most immediate concern are the several hundred 
applicants nationwide for legalization or so-called "amnesty" 
under the Immigration Reform and Control Act of 1986 (IRCA) 
that face denials of legalization without "waivers" of 
exclusion based on their HIV antibody seropositivity . There 
would be a direct and significant impact on these waiver 
decisions now pending at the Immigration and Naturalization 
Service (INS) if the National AIDS Commission would join other 
health officials and public policy makers in urging the 
generous granting of these waivers. The denial of these 
waivers by the INS would create a group of HIV seropositve 
persons living in the United States who would be afraid and 
unable to access adequate health care. 

At the same time, we are alarmed at the lack of pre- and 
post-testing counselling of immigrants who receive the HIV 
antibody test from the INS-"designated civil surgeons." 
Although the Centers for Disease Control (CDC) has issued 
instructions regarding such counselling, there has been no 
training of these INS civil surgeons and there is no 
monitoring of whether such counselling takes place. It has 
been our experience that, in fact, many INS civil surgeons 
either provide no counselling or actually provide incorrect 
information and even have made erroneous diagnoses. The INS 
has also provided incorrect information about HIV to 
immigrants being tested. Both the CDC and the INS seem to 
place the responsibility for counselling on the other agency 
with the result that no training or monitoring is done. 
Moreover, neither agency has accepted any responsibility for 
notifying persons who do test seropositive that waivers might 
be available. The National AIDS Commission would be an ideal 
forum to raise some of these issues of inter-agency 
responsibility. 

vii .imj . ,k* ■.»(•! it v» n We .are also extremely concerned about the various other 

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198 



categories of immigrants who are subject to the HIV antibody 
testing requirement but who cannot apply for waivers under 
current law. These immigrants include hundreds of HIV 
antibody seropositive Haitians and Cubans applying through a 
special IRCA legalization program and potentially hundreds of 
persons seeking to obtain lawful permanent residence in the 
United States through visa petitions filed by close family 
members or employers. Representative Barney Frank (D-MA) has 
introduced legislation (H.R. 1280) that would restructure all 
the grounds of exclusion and would allow certain lawful 
permanent residence applicants to apply for waivers. However, 
until such legislation is passed, these hundreds of HIV 
antibody seropositive immigrants have no protection from 
deportation. Their continued underground presence in the 
United States without any legal status also raises serious 
public health concerns. 

Another issue that has received much more media attention 
is the exclusion of nonimmigrants, or visitors, to the United 
States, based on HIV antibody status. This concern has not 
been addressed fully by the INS 1 new policy of granting 
waivers for stays of no longer than thirty days to visitors 
found to be HIV antibody seropositive. The international 
implications of our exclusion policy will be heightened as we 
approach next June's Sixth International AIDS Conference. 

Finally, we note that the Presidential Commission on the 
HIV Epidemic did recommend that the HIV antibody testing of 
refugees abroad seeking admission to the United States should 
be reevaluated twelve months after the implementation of the 
policy. Recommendation 11-47. That policy has now been in 
effect for almost two years and has resulted in the exclusion 
of at least two refugees (one from Zaire being processed in 
Kenya and one from Laos being processed in Thailand) . Both 
those refugees have applied for waivers but the INS has yet 
to respond to the waiver applications. 

Our HIV and Immigration Task Force has developed 
considerable experience and expertise on this issue and we are 
eager to provide any additional information or materials that 
your staff or the Commission may need to examine this issue. 
Please do not hesitate to call us if you have any questions. 
We thank you again for your interest and your personal 
commitment to responding to the HIV epidemic and look forward 
to hearing from your staff in the near future. 

Sincerely, 




Ignatius Bau (415) 543-9444 
Jorge Cortinas (415) 626-2360 
Monica Hernandez (415) 554-2444 
for the HIV and Immigration 
Task Force 



199 



AMERICAN BAR ASSOCIATION 

POLICY ON AIDS 

Adopted August, 1989 

BE IT RESOLVED, That the American Bar Association urges that 
federal, state, and local law, and the policies of private enti- 
ties concerning the Human Immunodeficiency Virus (HIV) should be 
consistent with the following principles. 



IMMIGRATION 



Legalization pursuant to the Immigration Reform and 
Control Act should not be denied to otherwise-quali- 
fied aliens solely because of HIV status. 

Non- immigrant visitors to the United States should not 
be barred solely because of HIV status. 

Otherwise-qualified political asylees and refugees 
should not be barred from the United States solely 
because of HIV status. 

The Attorney General should have the authority to 
waive exclusions based on HIV status for immigrants on 
a case-by-case basis. 



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201 



Appendix C 
BIOGRAPHICAL INFORMATION 



BIOGRAPHICAL INFORMATION 



Chairman June E. Osborn, M.D. is the Dean of the School of Public Health at the 
University of Michigan and Professor of Pediatrics and Communicable Diseases at the 
University of Michigan Medical School. She also serves on numerous federal and non- 
federal committees, including the AIDS Research Advisory Committee of the National 
Institute of Mental Health; the Ad Hoc Working Group on AIDS and the Nation's Blood 
Supply (Chair) for the National Heart, Lung and Blood Institute; the WHO Global 
Commission on AIDS; and the Robert Wood Johnson Foundation National Advisory 
Committee for AIDS Health Services Program (Chair). Dr. Osborn has researched and 
published extensively in the field of virology. She earned her M.D. at Case Western 
Reserve University School of Medicine. 



Vice Chairman David E. Rogers, M.D. has had an interesting and varied career since 
he completed his M.D. in 1948 at Cornell University and served an internship and residency 
at Johns Hopkins. Among his important appointments are those of Dean of Medicine and 
Vice President for Medical Affairs at Johns Hopkins University, and Medical Director of 
the Johns Hopkins Hospital. Dr. Rogers was appointed as the first Walsh McDermott 
University Professor of Medicine at the NYH-CUMC in November 1986. For the 15 years 
preceding this appointment, Dr. Rogers was the President of the Robert Wood Johnson 
Foundation in Princeton, N.J., the largest philanthropy devoting its resources to alleviating 
problems in the health care of Americans. Dr. Rogers has been very involved in the 
problems of AIDS, holding appointments as Chairman of the Advisory Council of the AIDS 
Institute of New York State, as a member of the Citizens Commission on AIDS of New 
York and New Jersey, Chair of the Scientific Advisory Committee, NYH Partnership 
Advisory Committee, and Chair of the New York City Mayoral Task Force on AIDS. 



Diane Ahrens is presently serving her fourth term as Commissioner of Ramsey 
County Minnesota. In 1987, she convened the Tri-County Task Force on AIDS to develop 
an AIDS Implementation Plan, which was passed unanimously by the Ramsey County Board 
in the Fall of 1988. In addition, as Chair of the National Association of Counties' Task 
Force on HrV and AIDS, Commissioner Ahrens has overseen the formulation of 
recommendations regarding the appropriate responsibilities of the county, state, and the 
federal governments in our nation's response to the AIDS epidemic. She earned her 
Masters Degree in Theology and Religious Education at Yale University. 



Scott Allen has done extensive research on the spiritual, ethical, and psychological 
dimensions of AIDS as a consultant to the Christian Life Commission of the Baptist 
General Convention of Texas. He also provides direct pastoral care for people with AIDS, 
and is often called upon to act as a liaison between PWA's and their religious community 
and/or family. In addition, Reverend Allen is the founder and Co-Coordinator of the AID: 

205 



Interfaith Network of Dallas, Chairperson of the Subcommittee on State Responsibility of 
the Special Texas Legislative Task Force on AIDS, and Board Member of AIDS ARMS, 
a program to meet the special human needs of PWA's. Reverend Allen earned his Masters 
in Divinity from the Golden Gate Theological Seminary, and served as pastor of the Pacific 
Baptist Church in California and a Minister of Education and Youth for the First Christian 
Church in Colorado Springs before joining the Christian Life Commission in 1985. 

Honarable Richard B. Cheney was nominated by President Bush to be Secretary of 
Defense on March 10, 1989, was confirmed by the United States Senate on March 17, 1989, 
and took the oath of office on March 21, 1989. In August 1974, when Gerald R. Ford 
assumed the Presidency, Mr. Cheney served on the Ford transition team and, and beginning 
in September 1974, as a Deputy Assistant to the President. In November 1975, be was 
named Assistant to the President and White House Chief of Staff, a position he held 
through the remainder of the Ford Administration, until January 1977. He returned to his 
home state of Wyoming in May 1977 to resume private life. Mr. Cheney was elected to 
Congress in November 1978. He was re-elected in 1980, 1982, 1984, 1986, and 1988. 

Harlon L. Dalton, Esq. is a Professor at Yale Law School and a leading authority 
on legal issues generated by the AIDS epidemic. His publications include, AIDS and the 
Law: A Guide for the Public . "AIDS: A Drama in Blackface" in Daedalus and "Thinking 
AIDS, Rethinking Law: An Ongoing Lesson in the Regulation of Human Behavior". Mr. 
Dalton serves on the Board of Directors of AIDS Project New Haven, the Advisory Board 
of the Connecticut Consortium of AIDS, and the Editorial Board of the AIDS Alert . He 
earned his J.D. from Yale Law School, and is a member of the Bar of New York, 
Connecticut, the Supreme Court of the United States, the United States District Court, and 
the United States Court of Appeals, Second Circuit. 



Honorable Edward J. Derwinski, President Bush's choice to become the first 
Secretary of the newly created Cabinet-level Department of Veterans Affairs, was confirmed 
by the Senate on March 2, 1989 and sworn in on March 15, 1989. Secretary Derwinski 
directs the activities of the federal government's second largest department, responsible for 
a nationwide system of health-care services and benefits programs for America's 27.3 
million veterans. A member of the U.S. House of Representatives from 1959 to 1983, 
representing Illinois' Fourth Congressional District, he was senior minority member of the 
House Foreign Affairs Committee and the House Post Office and Civil Service Committee. 
He played a major role in the passage of landmark Civil Service Reform, Postal Service 
Reorganization, and Foreign Service Reform legislation. 



Don C. Des Jarlais, Ph.D. is currently the Director of Research for the Chemical 
Dependency Institute of Beth Israel Medical Center and Deputy Director for AIDS 
Research with Narcotic and Drug Research, Inc. He is an international leader in the fields 
of AIDS and intravenous drug use and during the last six years, Dr. Des Jarlais has 
published over 50 articles on the topics. He was the plenary speaker on intravenous drug 
use and AIDS at the 3rd and 4th International Conferences on AIDS and serves as 
consultant to various institutions, including the Centers for Disease Control, the National 



206 



Institute on Drug Abuse, the National Academy of Sciences and the World Health 
Organization. He is a Guest Investigator at Rockefeller University and a Visiting Professor 
of Psychology with Columbia University. Dr. Des Jarlais earned his Doctorate of 
Philosophy in Social Psychology from the University of Michigan. 



Eunice Diaz, M.S., M.P.H. is currently an Assistant Clinical Professor of Family 
Medicine at the University of Southern California School of Medicine. She is a nationally 
acclaimed authority and speaker on the subject of AIDS in the Hispanic community, and 
a former board member of AIDS Project Los Angeles. In addition, Ms. Diaz has served 
on numerous AIDS-related committees and panels, including the Los Angeles County 
Commission on AIDS, the Planning Committee for the Surgeon General's Conference on 
Pediatric AIDS, and most recently, the Task Force on AIDS of the Society for Hospital 
Marketing and Public Relations, American Hospital Association. Ms. Diaz earned a Master 
of Science in Public Health and a Master of Public Health at the Loma Linda University. 



Donald S. Goldman is an attorney in private practice as a partner in the West 
Orange, New Jersey law firm of Harkavy, Goldman, Goldman & Caprio. Active in The 
National Hemophilia Foundation and its chapters for over 25 years, he served as its 
Chairman from 1983 to 1984 and its President from 1984 to 1986. Mr. Goldman 
coordinated the National Hemophilia Foundation's efforts to improve the safety of our 
nation's blood supply, started many of its efforts in HIV risk reduction and introduced 
initiatives to improve hemophilia and HIV service delivery to minorities. Currently he is 
also Vice-President of the National Health Council, Inc. Mr. Goldman earned his J.D. from 
Rutgers University, and has published and lectured widely on legal aspects of hemophilia, 
HIV infection, and other medical and ethical issues. He is a member of the Bar of New 
Jersey, the United States Court of Appeals for the Third Circuit, and the United States 
Supreme Court. 



Larry Kessler is the Co-Founder and Executive Director of AIDS Action Committee 
in Boston, a community-based service organization staffed by 75 full-time employees and 
over 1,500 volunteers. In addition, he serves on the Massachusetts Governor's Task Force 
on AIDS and the Boston Mayor's Task Force on AIDS, under appointments by Governor 
Dukakis and Mayor Flynn, respectively. Kessler is also a longtime Catholic activist and a 
member of the Board of Directors of both the National Catholic AIDS Ministry in New 
York and the AIDS Action Council in Washington, D.C. In 1987, Simmons College in 
Boston awarded him an Honorary Degree of Doctor of Human Services. 



Charles Konigsberg, M.D., M.P.H. has been Director of the Division of Health of 
the Kansas Department of Health and the Environment since October of 1988. Previously, 
he was the District Health Program Supervisor and Broward County Public Health Unit 
Director for the Department of Health and Rehabilitative Services in Fort Lauderdale. In 
Florida, Dr. Konigsberg represented the county health official perspective on the Governor's 
AIDS Advisory Task Force. Dr. Konigsberg has also served as a consultant to the Centers 
for Disease Control and the U.S. Public Health Service in the development of HIV 
prevention and control strategies. He earned his M.D. from the University of Tennessee 

207 



Center for the Health Sciences and his Master of Public Health in Community Health 
Administration from the University of North Carolina School of Public Health. 



Belinda Mason is a 31 year old mother of two children, who acquired AIDS through 
a blood transfusion. She was diagnosed with AIDS in January, 1987 and lived with the 
disease in an isolated, rural area, with no contact with other people with AIDS. In August 
1988, she founded the first organization in Kentucky and Indiana for people with HIV 
disease. She has traveled around the country speaking about the human side of the AIDS 
epidemic and providing education and perspective to groups of all sizes and interests from 
college students, to health care professionals and national policy makers. Mrs. Mason is 
now the president of the National Association of People with AIDS. 

Honorable J. Roy Rowland, M.D. is now serving his fourth term in the United States 
House of Representatives (Democrat, Georgia's Eighth Congressional District). As the only 
physician in Congress from 1985 to 1988, Congressman Rowland has provided leadership 
and insight on a number of health issues, such as infant mortality, rural health, the veterans' 
health system, and AIDS. His efforts on behalf of the AIDS community include sponsoring 
the legislation which authorized creation of the National Commission on AIDS and 
introducing a bill mandating study of AIDS among college students — an idea which was 
adopted administratively by the Centers for Disease Control. Congressman Rowland earned 
his M.D. from the Medical College of Georgia, and maintained a family practice in middle 
Georgia for three decades before pursuing a political career. 



Honorable Louis W. Sullivan, M.D. was sworn in as Secretary of Health and Human 
Services March 10, 1989. As head of the Department of Health and Human Services, Dr. 
Sullivan oversees the federal agency responsible for the major health, welfare, food and 
drug safety, medical research and income security programs serving the American people. 
Dr. Sullivan came to HHS from the Morehouse School of Medicine in Atlanta, Georgia. 
In July 1975, Dr. Sullivan had become founding dean and director of the medical education 
program at Morehouse College. Since July 1, 1981 when the School of Medicine became 
independent from Morehouse College, he had served as its first dean and president. In 
April 1985, the Morehouse School of Medicine was fully accredited and on May 17, 1985, 
the school awarded the M.D. degree to its first 16 graduates. 



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